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• Published: 23 June 2020

How to strengthen a health research system: WHO’s review, whose literature and who is providing leadership?

• Stephen R. Hanney   ORCID: orcid.org/0000-0002-7415-5932 1 ,
• Lucy Kanya 1 , 2 ,
• Subhash Pokhrel 1 ,
• Teresa H. Jones 1 &
• Annette Boaz 3  

Health Research Policy and Systems volume  18 , Article number:  72 ( 2020 ) Cite this article

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Health research is important for the achievement of the Sustainable Development Goals. However, there are many challenges facing health research, including securing sufficient funds, building capacity, producing research findings and using both local and global evidence, and avoiding waste. A WHO initiative addressed these challenges by developing a conceptual framework with four functions to guide the development of national health research systems. Despite some progress, more is needed before health research systems can meet their full potential of improving health systems. The WHO Regional Office for Europe commissioned an evidence synthesis of the systems-level literature. This Opinion piece considers its findings before reflecting on the vast additional literature available on the range of specific health research system functions related to the various challenges. Finally, it considers who should lead research system strengthening.

The evidence synthesis identifies two main approaches for strengthening national health research systems, namely implementing comprehensive and coherent strategies and participation in partnerships. The literature describing these approaches at the systems level also provides data on ways to strengthen each of the four functions of governance, securing financing, capacity-building, and production and use of research. Countries effectively implementing strategies include England, Ireland and Rwanda, whereas West Africa experienced effective partnerships. Recommended policy approaches for system strengthening are context specific. The vast literature on each function and the ever-growing evidence-base are illustrated by considering papers in just one key journal, Health Research Policy and Systems, and analysing the contribution of two national studies. A review of the functions of the Iranian system identifies over 200 relevant and mostly national records; an analysis of the creation of the English National Institute for Health Research describes the key leadership role played by the health department. Furthermore, WHO is playing leadership roles in helping coordinate partnerships within and across health research systems that have been attempting to tackle the COVID-19 crisis.

Conclusions

The evidence synthesis provides a firm basis for decision-making by policy-makers and research leaders looking to strengthen national health research systems within their own national context. It identifies five crucial policy approaches — conducting situation analysis, sustaining a comprehensive strategy, engaging stakeholders, evaluating impacts on health systems, and partnership participation. The vast and ever-growing additional literature could provide further perspectives, including on crucial leadership roles for health ministries.

Peer Review reports

Interest in strengthening health research systems has intensified following increasing recognition of the importance of research in achieving key goals such as universal health coverage [ 1 ] and the Sustainable Development Goals (SDGs) [ 2 ]. However, achieving progress in health research faces many challenges, including securing sufficient funds [ 3 , 4 , 5 , 6 , 7 , 8 , 9 ], building and retaining capacity [ 3 , 7 , 10 , 11 , 12 , 13 , 14 ], producing research findings, and using both local and global evidence [ 1 , 15 , 16 , 17 , 18 , 19 , 20 ].

Chalmers and Glasziou [ 21 ] dramatically highlighted the extent of the challenges facing health research by claiming, in 2009, that even where there was funding and capacity, up to 85% of all biomedical research was wasted because it asked the wrong questions, was poorly designed, or was either not published or poorly reported, with only about 50% of studies being published in full.

Many of these challenges have long been recognised and the adoption of a systems approach advocated. In 2000, the Bangkok Declaration on Health Research for Development promoted the importance of a systems approach, following consideration of how a health research system could “be integrated with a nation’s health development plan” [ 15 ]. It suggested that establishing and strengthening an effective health research system needed coherent and coordinated health research strategies [ 15 ]. National strategies should have specific combinations of various health research system components, tailored to the country’s circumstances.

The WHO’s Knowledge for Better Health initiative involved further work on these issues [ 3 , 16 ]. The Mexico Statement on Health Research, issued in 2004 by a Ministerial Summit, called for nations to take actions to strengthen their national health research systems (NHRSs). It was endorsed in 2005 by the Fifty-eighth World Health Assembly in a resolution committing its Member States to strengthening their NHRSs as a pathway to improve their overall health system [ 22 ].

As part of the initiative, Pang et al. [ 3 ] developed a conceptual framework to guide the analysis and strengthening of health research systems, including development of a health research strategy. While this can be used for planning, monitoring and evaluation of health research systems, it did not claim to provide a precise blueprint. The framework defined a health research system as “the people, institutions, and activities whose primary purpose in relation to research is to generate high-quality knowledge that can be used to promote, restore, and/or maintain the health status of populations; it should include the mechanisms adopted to encourage the utilization of research” [ 3 ].

The framework indicates the range of constituent components and how they can best be brought together into a coherent system. It identified four main functions for an effective system, namely stewardship, financing, capacity-building (or creating and sustaining resources), and producing and using research [ 3 ]. Each function is defined by operational components and consists of one or more of a total of nine such components.

Since then, progress is evidenced by analyses of developments in individual countries, including the National Institute for Health Research (NIHR) in England [ 23 , 24 , 25 ], and in repeat surveys conducted in various WHO regions, including Africa [ 4 , 26 , 27 ] and the Pan-American Health Organization (PAHO) [ 28 ]. However, as reported by those surveys and other publications, many challenges remain. For example, in February 2020 a new analysis by the WHO Global Observatory on Health R&D examined health research funding, concluding that “neglected diseases such as those on the WHO list of neglected tropical diseases remain very neglected in terms of R&D investments” [ 29 ].

Nevertheless, there are various initiatives underway, including in WHO’s Regional Office for Europe, which commissioned an evidence synthesis on the topic as part of its Action Plan to Strengthen the use of Evidence, Information and Research for Policy-making in the WHO European Region [ 18 ]. The synthesis is published in the WHO Region’s Health Evidence Network (HEN) report series and consists of a scoping review addressing the question “What is the evidence on policies, interventions and tools for establishing and/or strengthening NHRSs and their effectiveness?” [ 30 ].

The evidence synthesis focuses on the systems level and so primarily includes publications taking a systems approach at either the national or multi-national level. Not surprisingly, Health Research Policy and Systems ( HARPS ) is the single largest source of papers included in the HEN report. These were papers directly identified in the review’s search or papers included in the HEN report to illustrate a key point because they had been cited in one of the WHO reports or other systems-level collations of papers included in the synthesis.

While the system level papers did provide considerable data about each function, limited resources to conduct the scoping review meant that we had to exclude papers focusing solely on one specific function of a health research system or on just one field of health research. As acknowledged in the HEN report’s agenda for further research, there is a large number of publications (papers and grey literature) covering each function [ 30 ]. Therefore, reviewing all of these publications would be a major task but some exploration of the extent of the task, and the nature of such literature, could be informative. Furthermore, additional papers are continuously emerging, including from the various initiatives that are ongoing or just underway, for example, the European Health Research Network [ 31 ].

The three sections of this paper sequentially address the question of how to strengthen a health research system by:

Describing key points and conclusions from WHO’s HEN report.

Illustrating the nature of the ever-widening literature available on each function, or component, of a health research system by examining two sources in particular. First, the full range of papers published in HARPS in the 30 months up to February 2020. Second, the range of data gathered from publications or interviews that is included in detailed studies of the national health research systems in two countries – Iran [ 32 ] and England [ 33 ]; between them, these two papers also illustrate diverse aspects of the additional material that could be drawn upon.

Considering a key question in the analysis of the current and future initiatives, namely who is going to steer the development of health research systems? Here, information and insights from the HEN about this sometimes-controversial issue, along with wider continuing analysis, are drawn on in the more flexible and speculative way that can be undertaken in an Opinion piece compared to a formal evidence synthesis.

WHO’s review, whose literature and who is providing leadership?

Who’s review.

The evidence synthesis described by the HEN report [ 30 ] starts by describing the importance of NHRSs in helping to achieve universal health coverage [ 1 ] and the SDGs [ 2 ]. It goes on to analyse the challenges facing health research and describes how issues remain unresolved despite the development and application of a systems approach including WHO’s framework for health research systems [ 3 ]. Many countries do not have comprehensive national health research policies or strategies that would facilitate the introduction of a systems approach. Therefore, challenges remain around two key and overlapping sets of issues. First, how to develop a systems approach to maximise the benefits from the research resources available – this can be a challenge even in high-income countries with considerable research funding. Second, how best to strengthen each specific function and component of a health research system [ 30 ].

The HEN identifies two main systems-level approaches to strengthening NHRSs. The first is comprehensive and coherent strategies, which can be contained in either policy documents, such as those from the English NIHR [ 34 ], the Irish Health Research Board (HRB) [ 35 ] and the Rwandan Ministry of Health [ 14 ], or in specific legislation as in the Philippines [ 36 ]. The second systems-level approach involves partnerships and multi-country initiatives, especially with international organisations. Two initiatives from the West African Health Organization (WAHO) are particularly important examples [ 5 , 37 ]. Here, the ministries of health of the 15 West African member countries worked together in a joint initiative covering all the countries and with funding and expertise from a range of partners, including the Council on Health Research for Development (COHRED), the Canadian International Research Centre, the Special Programme for Research and Training in Tropical Diseases, and the Wellcome Trust. All WHO Regions have seen multi-country activities by WHO and/or COHRED to strengthen NHRSs, including the repeat surveys that identify areas for action [ 4 , 26 , 28 ].

Then, broadly using the WHO framework as the structure [ 3 ], the HEN identifies key points from systems-level literature on each of the four functions and nine components. The components of the stewardship and governance function include defining a vision, ethical review, research priority-setting, and appropriate monitoring and evaluation [ 3 ]. Consultation with health system stakeholders should enhance the relevance of the research priorities to the healthcare system, with examples of extensive priority-setting engagement activities sometimes being seen as a key aspect of building the NHRS as in Brazil [ 38 ]. Evaluating the impact of research on policy and practice should help researchers to focus on achieving such impact and was therefore promoted in the World Health Report 2013 [ 1 ].

Securing finance can involve obtaining funding from sources within the country and from external donors or multi-national organisations [ 30 ]. Targets for research expenditure, such as the 2% of national health expenditure set by the 1990 Commission on Health Research for Development [ 39 ], can usefully be brought into health research system strategies as in Rwanda [ 14 ]. Major health research strategies from countries within the European Union can highlight the importance of European Union funding as in France [ 40 ], Ireland [ 35 ] and Malta [ 41 ]. Requests for funding can be more effective when linked to other parts of the overall strategy, including identified priorities that need supporting through donor funding [ 42 ] and assessments of the benefits obtained from previous funding such as in England [ 24 ].

Capacity-building involves building, strengthening and sustaining the human and physical capacity to conduct, absorb and utilise health research [ 3 ]. In 2016, Santoro et al. [ 43 ] identified the generally low levels of research production in 17 countries of the former Soviet Union and south-eastern Europe and made recommendations for the sustained investment in training and career development of researchers, which should go beyond scholarships for training abroad and involve comprehensive strategies to ensure clear career structures. Strategies such as that from Inserm in France set out comprehensive plans for capacity-building [ 40 ] and strategies in both England and South Africa addressed priority gaps identified in the research capacity within the healthcare professions [ 34 , 44 ]. Donors can play an important part in building capacity but, recognising the need to avoid donor domination, often do so through partnerships. These can take diverse forms ranging from multi-country initiatives, such as that by WAHO, which included an initiative focusing on the challenges of post-conflict countries but was unable to meet all the needs [ 37 ], to accounts that focus on the partnership to address a broad range of capacity issues in a single country such as Malawi [ 7 ], to partnerships between individual institutions. Examples of the latter can feature particular challenges – the James Cook University in Australia worked with the Atoifi Adventist Hospital in Malaita, the most populous province of the Solomon Islands, to start establishing health research system capacity on the island using an inclusive, participatory approach [ 45 ]. Increasingly, there are also south–south partnerships, for example, an account of the Panamanian health research system described how the country’s first doctoral programme in biotechnology was established with support from Acharya Nagarjuna University in India [ 46 ]. The Rwandan strategy described plans to tackle the ‘brain drain’ through making the country an appealing place to conduct health research in terms of job requirements and providing opportunities for career advancement [ 14 ].

The three mutually reinforcing components of the producing and using research function encourage the production of scientifically valid findings that are relevant for users and communicated to them in an effective manner [ 30 ]. Major research funding bodies increasingly seek to address the waste issues raised by Chalmers and Glasziou [ 21 ] by working together in the Ensuring Value in Research (EViR) Funders’ Collaboration and Development Forum. It issued a consensus statement committing the organisations signing it to “require robust research design, conduct and analysis” [ 47 ]. The Forum is convened by the English NIHR, the Netherlands Organization for Health Research and Development, and the Patient-Centered Outcomes Research Institute (United States) with the active support of major research funding organisations from Australia, Ireland (HRB), Italy, Sweden and Wales, plus the Special Programme for Research and Training in Tropical Diseases [ 48 ]. The first WAHO intervention also worked to boost research publications, including by creating a regional peer-reviewed, multilingual journal [ 5 ]. How research is produced can increase the chance that the evidence will be used in the health system, for example, the English NIHR strategy noted that leading medical centres with substantial funding to conduct translational research can act as “early adopters of new insights in technologies, techniques and treatments for improving health” [ 34 ].

Fostering the use of research requires specific knowledge translation and management approaches that draw on both locally produced and globally available evidence. Various health research strategies promote the role of Cochrane, including in England, where a unified knowledge management system to meet the needs of various stakeholders, including patients and their carers, involves funding both Cochrane and a review centre focusing on the needs of the National Health System [ 34 ]. In Ireland, the HRB strategy facilitated evidence-informed decisions through promoting access to the Cochrane Library and supporting training in conducting high-quality Cochrane reviews [ 35 ]. South Africa Cochrane featured as an important element in the NHRS [ 44 ]. The Rwandan strategy stated that “The Government of Rwanda is committed to using research findings to make evidence-based decisions that will improve health in Rwanda” [ 14 ]. It aimed to orientate various functions, including agenda-setting, monitoring and evaluation, and capacity-building, towards facilitating this challenging aim. The World Health Report 2013 highlighted various mechanisms that health research systems could adopt, including EVIPNet (Evidence-informed Policy Network), to promote the use of research [ 1 , 49 ].

The review also considers the effectiveness of approaches to strengthening NHRSs. Several reviews identified the effectiveness of the comprehensive approach taken by Professor Dame Sally Davies in creating the English NHRS [ 23 , 25 , 50 ]. The title of one analysis, ‘NIHR at 10: 100 examples, 10 themes, 1 transformation’, emphasises that the success of the NIHR depended on a range of elements being brought together in one transformation [ 25 , 50 ]. One of the 10 themes was the involvement of patients in decisions about research priorities and processes and, based on this, another recent analysis highlighted England and Alberta (Canada) as having health research systems that had made important progress [ 51 ]. Davies herself reflected on the success of the NIHR and stated: “What we envisaged was integrating a health research system into the health care delivery system so that the two would become interdependent and synergistic ” [ 24 ]. WHO’s Regional Office for Africa drew on their series of surveys of the performance of countries in building NHRSs and analysed the data from the 2014 and 2018 surveys using the NHRS barometer that they developed to score progress on a range of items linked to the list of NHRS functions [ 11 , 26 ]. In the 2014 survey, the Rwandan system was identified as the best performing and it, along with the majority of systems, was reported to have further improved in the 2018 survey; by then, South Africa was reported to have the best performance in Africa. The surveys also illustrate how the multi-country approach makes a useful contribution to strengthening NHRSs by helping to target action. Furthermore, the WAHO interventions made some progress but, while the evaluations identified the importance of political will and leadership provided by WAHO’s parent organisation of West African states, they also emphasised that building capacity for a whole NHRS is a significant task requiring commitment over the long-term [ 17 , 37 ].

The HEN review collated a range of examples of tools for NHRS strengthening. These were identified from the systems level discussions of NHRS strategies and partnerships and/or the major reports calling for NHRS strengthening such as the World Health Report 2013 [ 1 ]. The HEN lists these in an Annex [ 30 ].

The discussion in the HEN draws on the literature that was included to identify five key policies that those responsible for strengthening NHRSs could consider [ 30 ], namely conduct context, or situational, analyses to inform strengthening activities [ 5 , 34 , 35 , 37 , 52 , 53 , 54 ], develop a comprehensive and coherent strategy [ 14 , 34 , 35 , 36 ], engage stakeholders in the development and operation of the strategy [ 7 , 23 , 34 , 35 , 38 , 41 , 44 , 51 , 55 , 56 , 57 , 58 , 59 ], adopt monitoring and evaluation tools that focus on the objectives of the NHRS, including health improvement [ 1 , 14 , 24 , 60 , 61 ], and develop partnerships [ 5 , 11 , 28 , 37 , 62 ]. Examples of the evidence to support or illustrate each policy are given in Table  1 .

In summary, therefore, this section shows that the WHO evidence synthesis, published as a HEN report [ 30 ], provides a firm basis for decision-making by policy-makers and research leaders looking to strengthen the health research system in their country. It analyses, in turn, the individual functions and components within a system and identifies a series of tools that can be used for strengthening many of them. Finally, this section highlights the five crucial policy approaches that the HEN report suggests can be applied as appropriate to the context of the country (Table 1 ).

Whose literature?

As noted above, the HEN was a scoping review and focused on the literature at the systems level rather than on publications (papers and grey literature) related solely to specific functions, types or fields of research [ 30 ]. Therefore, there is scope for further work to incorporate an even wider range of publications than the 112 included in the HEN review [ 30 ]. The discussion in the HEN suggests that further research could usefully take the form of a series of reviews on the extensive literature on each of the NHRS functions or components, which could then be collated [ 30 ]. Just two of the many available sources illustrate the nature of the vast literature available on each function, or component, of a health research system and the way the literature on that, and the system level developments, is ever-widening. First, we can examine the papers published in HARPS, the specialist journal in the field of building NHRSs. Second, we can focus on two very different but detailed studies of individual NHRSs – one conducted for a PhD thesis to show the 50 year history of the development of all the functions in the Iranian health research system [ 32 ] and the other an interview-based study to understand the factors behind the creation of the NIHR with its new strategy [ 33 ].

In terms of further reviews of the literature on specific functions or components, HARPS would probably be a key source. In the summer of 2017, an analysis by the retiring editors of the papers published in the journal from its inception in 2002 identified many papers that had been published on each of the functions or components of a health research system [ 63 ]. While this editors’ analysis was included in the HEN review because it organised its discussion of the papers at the systems level, the individual papers in it were, in general, only included in the HEN review if they, too, adopted a systems approach at the national or partnership level, or were also cited in a report such as the World Health Report 2013 [ 1 ]. Examples of such papers include Viergever et al. on priority-setting [ 59 ], Bates et al. on capacity-building [ 64 ], and Lavis et al. on the SUPPORT tools for evidence-informed policy-making [ 65 ]. Therefore, many additional papers related to specific functions (or fields) could be consulted, in a formal review or otherwise, in any future series of reviews, each with a narrow focus on strengthening a specific function.

To further inform this current Opinion piece, a quick ‘hand-search’ was conducted of the papers published in HARPS in the 30 months since the previous analysis in mid-2017 [ 63 ]. This again identified a wide range of papers on specific components, especially priority-setting, evaluation of research impacts, capacity-building and the translation of research (or knowledge mobilisation). Various papers linked the final two points and discussed capacity-building and knowledge translation [ 13 , 66 ]. Such a focus is entirely consistent with the aim described by the incoming editors in Autumn 2017 of bringing “all elements of the research–policy world together – such that the research which is done is useful and that it is used” [ 67 ]. In this more recent phase of HARPS , there have also been important papers on issues related to the policies ‘recommended’ at the end of the HEN and listed above, including the contribution of stakeholder engagement in research [ 68 ].

The more recent papers could sometimes provide useful further tools on specific functions. Their narrow focus meant they had not been directly included through the HEN search and, further, they had not been included in any of the major reports also used as sources for tools such as the World Health Report 2013 [ 1 ]. In some instances, this was because they were too recent, for example, the ISRIA statement by Adam et al. [ 69 ] describing the ten-point guidelines for an effective process of research impact assessment prepared by the International School on Research Impact Assessment (ISRIA). Even more recently, the Intervention Scalability Assessment Tool, developed by Milat et al. [ 70 ], was proposed for use not only by health policy-makers and practitioners for selecting interventions to scale up but also to help design research to fill evidence gaps. This analysis of the papers from just one journal reinforces the message that there is likely to be a plentiful supply of literature for a future review on any of the main specific components.

This message is further reinforced by a more detailed analysis of the papers in HARPS in the first 2 months of 2020. Articles on the main components of a NHRS were supplemented by some important papers on topics that are highly relevant but which feature less frequently in HARPS. These include a study aimed at reducing the research waste that arises from disproportionate regulation by examining the practices for exempting low-risk research from ethics review in four high-income countries [ 71 ], the Global Observatory’s paper on research funding described earlier [ 29 ], a study on the governance of national health research funding institutions [ 72 ], and one on a more recent topic of growing significance – an analysis of attempts to boost gender equality in health research [ 73 ]. Additionally, some of the papers on specific components, such as impact evaluation or use of evidence, are extending the analysis. Examples include consideration of how research impact assessments are implemented in practice within research organisations [ 74 ] and how evidence is used in decision-making in crisis zones [ 75 ]. To illustrate the volume of studies being produced, there has been a flurry of studies, in the first 2 months of 2020 alone, on the collaboration and coproduction of health research. The titles include ‘Building an integrated knowledge translation (IKT) evidence base: colloquium proceedings and research direction’ [ 76 ], ‘Using a ‘rich picture’ to facilitate systems thinking in research coproduction’ [ 77 ], ‘Exploring the evolution of engagement between academic public health researchers and decision-makers: from initiation to dissolution’ [ 78 ], ‘Research co-design in health: a rapid overview of reviews’ [ 79 ], and ‘Conceptualising the initiation of researcher and research user partnerships: a meta-narrative review’ [ 80 ].

Finally, another article in May 2020 presented a new conceptual model for health research systems to strengthen health inequalities research [ 81 ]. Here, we have focused on just one journal, HARPS, because it was the largest single source of papers in the HEN report, which totalled 140 publications (additional publications were included to the 112 in the review to help set the background, provide examples of key tools, etc). However, even with the review’s focus on the system level, HARPS only provided 22% (31 out of 140) of the publications; 31% (43 of 140) came from other journals and 47% (66 of 140) were other types of publication. If the focus was shifted to including papers on specific functions it is highly likely that there would be a higher proportion of papers from other journals.

The authors of two single-country papers on the development of the health research system, Mansoori [ 32 ] about Iran and Atkinson et al. [ 33 ] on the creation of the NIHR in England, both highlight the importance of context but also claim their findings could have wider application. Examining these two papers is also informative because of the differences between the studies, including one being located in a low- or middle-income country, and the other not.

Mansoori’s narrative review of studies addressing the health research system of Iran included 204 relevant and mostly national records, categorised using an approach informed by the functions and components of WHO’s NHRS framework [ 32 ]. The papers and grey literature documents included were all available in English or Persian, and mostly published in journals other than HARPS, and illustrate the vast literature available at a global level on the various components of a NHRS . They informed an impressively detailed account of the various NHRS components and the attempts to strengthen them. For example, the account of the development of the national level ethical overview includes a fully documented chronology of the progress over 25 years and some insightful analysis of how the progress was facilitated by the pivotal role of Professor Bagher Larijani, who was a prominent medical practitioner, leading researcher and founder of the Medical Ethics Research Centre in Iran. He was able to “use the confidence that Iranian authorities had in him as an opportunity” [ 32 ].

While Mansoori’s review was included in the HEN review, only a tiny fraction of the available data about Iran could be included, primarily in a brief description of the system’s effectiveness [ 30 ]. However, the full paper could usefully inform the approach of researchers and/or policy-makers planning a detailed analysis of their own NHRS prior to embarking on exercises to strengthen it, and “ [t] he findings emphasized that improvement of HRS functions requires addressing context-specific problems” [ 32 ]. As an illustration, Mansoori’s review identified a need for “ a more systematic, inclusive” approach to research priority-setting [ 32 ] and, in the same stream of research, she co-led just such a priority-setting exercise to help address the knowledge gaps related to achieving both Iran’s national health policies and the SDGs [ 82 ].

Atkinson et al. examined the creation of what might be viewed as the most successful attempt to strengthen a health research system in their paper ‘‘All the stars were aligned’? The origins of England’s National Institute for Health Research’ [ 33 ]. Compared with Mansoori, the authors adopted a different but equally detailed approach in their analysis, which was conducted principally through interviews and a witness seminar but also drew on the existing literature and documents [ 33 ]. They showed how the formation of the NIHR was led from the Department of Health by a key group driven by Sally Davies. They aimed to improve patient care through both the strengthening of evidence-based medicine and through boosting the infrastructure to facilitate pharmaceutical clinical trials that would also meet wider industrial and economic goals.

As with Mansoori’s study, consideration was given to how the full analysis could be informative to any planned detailed study or reforms in any other country. The key observations were similar to the recommendations from the HEN report with a focus on stakeholder engagement and building support: “ [t] wo measures likely to contribute to political support are to place the greatest emphasis on ‘problem’ rather than ‘investigation’ research, and to devote attention to measuring and reporting research ‘payback’ ” [ 33 ]. Atkinson et al.’s paper is also a link to the other main source considered here because it was a recent paper published in HARPS.

In summary, if further analysis and research beyond that in the WHO evidence synthesis [ 30 ] is thought to be relevant in the particular country looking to strengthen its health research system, this Opinion piece indicates some of the types of additional sources of information that are available and how they might be organised. The vast literature on each function and the ever-growing evidence base are illustrated by considering papers in just one key journal, HARPs, and analysing the contribution of two national studies. A review of the functions of the Iranian system identifies over 200 relevant, mostly national, records and an analysis of the creation of the English NIHR describes the key leadership role played from the health department.

Who is providing leadership?

The above analysis demonstrates that there is no shortage of useful material on which to draw when strengthening health research systems. However, key questions remain as to who might best lead or steer attempts to strengthen such a system.

The papers by both Mansoori [ 32 ] and Atkinson et al. [ 33 ] illustrate that, where a key committed individual has the capacity and opportunity to provide leadership, this can be a vital element in making progress. However, the institutional factors are also crucial.

The HEN developed the argument that a department or ministry of health will have a particular interest and perhaps experience in promoting research agendas that meet the needs of the healthcare system and in helping to develop mechanisms to use the findings from such research, where appropriate, to inform local policy and practice [ 30 ]. The health ministry or a research council responsible to it played an important role in the various systems identified above as being effective, as was also the case in the WAHO initiative [ 30 ]. In some cases, as with Zambia, more progress was made once the ministry of health elected to play a more important role, sometimes in place of other stakeholders [ 57 ]. Examples of the important role that health ministries can play were described in the 2013 World Health Report, including on Paraguay: “ the support of the Minister of Health backed by the President of Paraguay has been a key factor in the development of a national health research system” [ 1 ]. Additionally, naturally enough, the activities of the various WHO regional offices in boosting NHRSs tend to focus on working with the national ministries of health, including work in Europe [ 31 ] and by PAHO [ 28 ]. Conversely, several analyses illustrate that progress in strengthening the NHRS might be limited where key parts of the ministry of health, for whatever reason, do not provide support [ 9 , 83 ].

Nevertheless, some disadvantages or dangers were identified when the ministry of health plays the leading role. First, in England prior to the creation of the NIHR as well as in some other countries, the research funds controlled by the health ministry were sometimes appropriated by other parts of the health system when they were under particular pressure for resources [ 84 ]. Similarly, there have been a few reports that health research funding lost out when donor funds that had previously been allocated specifically for health research programmes were replaced by donations of funds to be allocated by the nation’s own health system according to its own priorities [ 85 , 86 ]. One way of attempting to mitigate the danger is, as undertaken by the NIHR and described by Atkinson, by building support for health research through measuring and reporting the payback from research [ 24 , 33 ].

The second danger arises because, traditionally, many researchers argued that the best science came when they had the freedom to identify the key research topics, rather than having priorities set by others [ 84 ]. Therefore, they argued, the responsibility for funding and organising health research should be left to organisations that are part of the research system and independent of the health system [ 84 ]. Furthermore, despite the growth of interest in coproduction approaches noted above, there have also been recent doubts raised about the assumption that coproduction is always the most appropriate approach [ 87 ]. This issue clearly requires sensitive handling. Indeed, Atkinson et al. [ 33 ] argue that one of the great successes of the NIHR is that this issue has been so skilfully handled by the NIHR that external input, or stakeholder engagement, in setting agendas has become widely accepted and the structures created give ministers a sense of ownership without sacrificing scientific independence.

The efforts of WAHO [ 5 , 37 ] and the WHO regional offices for Africa and PAHO [ 11 , 26 , 28 , 62 ] indicate that partnerships can be helpful. In Europe, the WHO regional office worked with Member States to create the European Health Research Network, which is intended to help nations with limited NHRSs who wish to make more progress [ 31 ].

Partnerships can provide important support and encouragement, but the evidence suggests there must be strong political will somewhere within the political and/or health systems for a health research system to be fully strengthened. The Central Asian countries in WHO’s European Region seem to provide an illustration of this point. A COHRED collaborative initiative successfully resulted in situation analyses being produced in each country and then jointly discussed as the basis for action [ 88 ], but according to the analysis by Santoro et al. [ 43 ], limited progress seems to have been made in the subsequent years.

The importance of partnerships and collaboration in focusing research efforts in an extreme crisis, with a leadership role for the WHO, has been seen in the race to find treatments for COVID-19 and vaccines against severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), which causes the COVID-19 disease [ 89 ]. In many NHRSs across the globe, including in the Philippines, scientists are coming together to participate in WHO’s Solidarity Trial, which will test the safety and effectiveness of various possible therapies for treating COVID-19 [ 90 ]. Sarah Gilbert, leader of Oxford University’s Jenner Institute’s work on developing one of the leading vaccine candidates explained that cooperation was vital for tackling the crisis: “Work is continuing at a very fast pace, and I am in no doubt that we will see an unprecedented spirit of collaboration and cooperation, convened by WHO, as we move towards a shared global goal of COVID-19 prevention through vaccination” [ 91 ]. A key issue going forward is how such cooperation can be built on in strengthening NHRSs into the future. For now, it is recommended that a prospective study be conducted to analyse all that is being done in different NHRSs to speed up research during the pandemic, with a view to taking lessons about cooperation, partnerships and other matters into strengthening NHRSs in the future [ 89 ].

The WHO evidence synthesis, published as a HEN report [ 30 ], provides a firm basis for decision-making by policy-makers and research leaders looking to strengthen the health research system in their country. It identifies five crucial policy approaches that can be applied as appropriate to the context of the country – conducting situation analyses, sustaining a comprehensive strategy, engaging stakeholders, evaluating impacts on health policies and practices, and partnership participation. It also analyses, in turn, the individual functions and components within a system and identifies a series of tools that can be used for strengthening many of them.

If further analysis and research is thought to be relevant in the particular country looking to strengthen its health research system, this Opinion piece indicates some of the types of additional sources of information that are available. The Opinion piece also discusses aspects of the sometimes-controversial question of who should lead or steer attempts to strengthen NHRSs. Again, the context of the particular nation will be crucial in determining the most appropriate course to take, as emphasised by both Mansoori [ 32 ] and Atkinson et al. [ 33 ], but at least some involvement of the ministry of health is likely to be beneficial; additionally, sometimes, key individuals can play a crucial leadership role in strengthening the whole system or one component. In countries with a less developed tradition of conducting health research, partnerships with other countries and/or with international organisations can help lead the progress and learning for all partners. The valuable role that international organisations, such as WHO, can play in leading partnerships and cooperation to strengthen health research systems is being highlighted during the COVID-19 crisis.

Overall, therefore, the full WHO HEN report not only provides a detailed analysis of NHRS strengthening, it also provides a structure within which an even wider and ongoing literature can be considered. Additionally, it contains a perhaps more nuanced account, on which this paper builds, of some aspects of the literature around the issue of who should provide leadership in developing NHRSs and identifies the importance of ministry of health involvement.

Availability of data and materials

The full details of the papers included in the Health Evidence Network Evidence Synthesis are provided in that report, which is cited in this paper as reference [ 30 ]. The additional analysis of papers from Health Research Policy and Systems was based on the open access publications.

Abbreviations

Council on Health Research for Development

Health Research Policy and Systems

Health Evidence Network

Health Research Board

National Health Research System

National Institute for Health Research

Pan-American Health Organization

• Sustainable Development Goals

West African Health Organization

World Health Organization. The World Health Report 2013: research for universal health coverage. Geneva: WHO; 2013. https://apps.who.int/iris/bitstream/handle/10665/85761/9789240690837_eng.pdf?sequence=2 . Accessed 19 Dec 2019.

Book   Google Scholar  

United Nations. Transforming our world: the 2030 agenda for sustainable development. General Assembly resolution 70/1. New York: UN; 2015. https://www.un.org/ga/search/view_doc.asp?symbol=A/RES/70/1&Lang=E . Accessed 19 Dec 2019.

Google Scholar  

Pang T, Sadana R, Hanney S, Bhutta ZA, Hyder AA, Simon J. Knowledge for better health: a conceptual framework and foundation for health research systems. Bull World Health Organ. 2003;81(11):815–20.

PubMed   Google Scholar  

Kirigia JM, Ota MO, Motari M, Bataringaya JE, Mouhouelo P. National health research systems in the WHO African Region: current status and the way forward. Health Res Policy Syst. 2015;13:61. https://doi.org/10.1186/s12961-015-0054-3 .

Article   PubMed   PubMed Central   Google Scholar  

Aidam J, Sombié I. The West African Health Organization’s experience in improving the health research environment in the ECOWAS region. Health Res Policy Syst. 2016;14:30. https://doi.org/10.1186/s12961-016-0102-7 .

Grépin KA, Pinkstaff CB, Shroff ZC, Ghaffar G. Donor funding health policy and systems research in low- and middle-income countries: how much, from where and to whom. Health Res Policy Syst. 2017;15:68. https://doi.org/10.1186/s12961-017-0224-6 .

Cole DC, Nyirenda LJ, Fazal N, Bates I. Implementing a national health research for development platform in a low-income country: a review of Malawi’s Health Research Capacity Strengthening Initiative. Health Res Policy Syst. 2016;14:24. https://doi.org/10.1186/s12961-016-0094-3 .

D'Souza C, Sadana R. Why do case studies on national health research systems matter? Identifying common challenges in low- and middle-income countries. Soc Sci Med. 2006;62(8):2072–8. https://doi.org/10.1016/j.socscimed.2005.08.022 .

Article   PubMed   Google Scholar  

AlKhaldi M, Alkaiyat A, Abed Y, Pfeiffer C, Halaseh R, Salah R, et al. The Palestinian health research system: who orchestrates the system, how and based on what? A qualitatitve assessment. Health Res Policy Syst. 2018;16:69. https://doi.org/10.1186/s12961-018-0347-4 .

Ekeroma AJ, Biribo S, Herman J, Hill A, Kenealy T. Health research systems in six Pacific island countries and territories. J Res Dev. 2016;4:1. https://doi.org/10.4172/2311-3278.1000141 .

Article   Google Scholar  

Kirigia JM, Ota MO, Senkubuge F, Wiysonge CS, Mayosi BM. Developing the African national health research systems barometer. Health Res Policy Syst. 2016;14:53. https://doi.org/10.1186/s12961-016-0121-4 .

Ghannem H, Becerra-Posada F, IJsselmuiden C, Helwa I, de Haan S. National research for health system mapping in 5 countries in the Eastern Mediterranean Region and perspectives on strengthening the systems. East Mediterr Health J. 2011;17(3):260–1.

Shroff Z, Javadi D, Gilson L, Kang R, Ghaffar G. Institutional capacity to generate and use evidence in LMICs: current state and opportunities for HPSR. Health Res Policy Syst. 2017;15:94. https://doi.org/10.1186/s12961-017-0261-1 .

Health Sector Research Policy. Kigali: Rwanda Ministry of Health; 2012. http://moh.gov.rw/fileadmin/templates/policies/Health_Sector_Research_Policy.pdf . Accessed 1 Jan 2020.

Report of the International Conference on Health Research for Development, Bangkok, 10–13 October 2000. Geneva: International Organizing Committee; 2001. http://www.cohred.org/downloads/708.pdf . Accessed 1 Jan 2020.

World Health Organization. World report on knowledge for better health: strengthening health systems. Geneva: WHO; 2004. https://apps.who.int/iris/bitstream/handle/10665/43058/9241562811.pdf?sequence=1&isAllowed=y . Accessed 19 Dec 2019.

World Health Organization. National Health Research Systems: report of an international workshop. International Workshop on National Health Research Systems, Cha-am, Thailand, 12–15 March 2001. Geneva: WHO; 2002. https://apps.who.int/iris/bitstream/handle/10665/42455/a74582.pdf?sequence=1&isAllowed=y . Accessed 19 Dec 2019.

Action Plan to Strengthen the Use of Evidence, Information and Research for Policy-making in the WHO European Region. Regional Committee for Europe 66th session; EUR/RC66/12 + EUR/RC66/Conf.Doc./8. Copenhagen; WHO Regional Office for Europe; 2016. http://www.euro.who.int/__data/assets/pdf_file/0006/314727/66wd12e_EIPActionPlan_160528.pdf?ua=1 . Accessed 19 Dec 2019.

Edwards A, Zweigenthal V, Olivier J. Evidence map of knowledge translation strategies, outcomes, facilitators and barriers in African health systems. Health Res Policy Syst. 2019;17:16. https://doi.org/10.1186/s12961-019-0419-0 .

Murunga VI, Oronje RN, Bates I, et al. Review of published evidence on knowledge translation capacity, practice and support among researchers and research institutions in low- and middle-income countries. Health Res Policy Syst. 2020;18:16. https://doi.org/10.1186/s12961-019-0524-0 .

Chalmers I, Glasziou P. Avoidable waste in the production and reporting of research evidence. Lancet. 2009;374(9683):86–9. https://doi.org/10.1016/S0140-6736(09)60329-9 .

World Health Organization. Ministerial Summit on Health Research. Report by the Secretariat. In: Fifty-eighth World Health Assembly, Provisional Agenda Item 13.18 (A58/22). Geneva: WHO; 2005. http://apps.who.int/gb/archive/pdf_files/WHA58/A58_22-en.pdf . Accessed 17 Jan 2020.

Hanney S, Kuruvilla S, Soper B, Mays N. Who needs what from a national health research system: lessons from reforms to the English Department of Health's R&D system. Health Res Policy Syst. 2010;8:11. https://doi.org/10.1186/1478-4505-8-11 .

Davies S. Ten years of the NIHR: achievements and challenges for the next decade (23rd Annual Lecture, Royal College of Physicians). London: Office of Health Economics; 2017. https://www.ohe.org/sites/default/files/10%20years%20of%20NIHR%20V8.pdf . Accessed 1 Jan 2020.

Morgan Jones M, Kamenetzky A, Manville C, Ghiga I, MacLure C, Harte E, et al. The National Institute for Health at 10 years: an impact synthesis. Summary report. Santa Monica: RAND Corporation; 2016. http://www.rand.org/content/dam/rand/pubs/research_reports/RR1500/RR1574/RAND_RR1574.summary.pdf . Accessed 19 Dec 2019.

Rusakaniko S, Makanga M, Ota MO, Bockarie M, Banda G, Okeibunor J, et al. Strengthening national health research systems in the WHO African Region: progress towards universal health coverage. Glob Health. 2019;15:50. https://doi.org/10.1186/s12992-019-0492-8 .

Nabyonga-Orem J, Okeibunor J. Towards universal health coverage: can health research systems deliver contextualised evidence to guide progress in Africa? BMJ Glob Health. 2019;4:e001910. https://doi.org/10.1136/bmjgh-2019-001910 .

Becerra-Posada F, Minayo M, Quental C, de Haan S. National research for health systems in Latin America and the Caribbean: moving towards the right direction? Health Res Policy Syst. 2014;12:13. https://doi.org/10.1186/1478-4505-12-13 .

Ralaidovy AH, Adam T, Boucher P. Resource allocation for biomedical research: analysis of investments by major funders. Health Res Policy Syst. 2020;18:20. https://doi.org/10.1186/s12961-020-0532-0 .

Hanney S, Kanya L, Pokhrel S, Jones T, Boaz A. What is the evidence on policies, interventions and tools for establishing and/or strengthening national health research systems and their effectiveness? Health Evidence Network (HEN) synthesis report 69. Copenhagen: WHO Regional Office for Europe; 2020.  https://apps.who.int/iris/bitstream/handle/10665/331703/9789289054942-eng.pdf .

Strengthening national health research systems: implementation of the action plan to strengthen the use of evidence, information and research for policy-making in the WHO European region. Report of the first multicountry meeting on research for health, Sofia, Bulgaria, 15–17 November 2017. Copenhagen: WHO Regional Office for Europe; 2018. http://www.euro.who.int/__data/assets/pdf_file/0009/367371/who-nhrs-meeting-report-eng.pdf?ua=1 . Accessed 19 Dec 2019.

Mansoori P. Evolution of Iran’s health research system over the past 50 years: a narrative review. J Glob Health. 2018;8(2):020703. https://doi.org/10.7189/jogh.08.020703 .

Atkinson P, Sheard S, Walley T. ‘All the stars were aligned’? The origins of England’s National Institute for Health Research. Health Res Policy Syst. 2019;17:95. https://doi.org/10.1186/s12961-019-0491-5 .

Department of Health. Best research for best health: a new national health research strategy. The NHS contribution to health research in England. London: Department of Health; 2006.  https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/568772/dh_4127152_v2.pdf . Accessed 1 May 2020.

Research, Evidence, Action. Health Research Board Strategy 2016–2020. Dublin: Health Research Board; 2015. https://www.hrb.ie/fileadmin/publications_files/HRB_Strategy_2016-2020.pdf . Accessed 1 Jan 2020.

An Act Institutionalizing the Philippine National Health Research System. Republic Act No. 10532. Manilla: Republic of the Philippines; 2013. https://www.officialgazette.gov.ph/2013/05/07/republic-act-no-10532/ . Accessed 19 Dec 2019.

Sombié I, Aidam J, Montorzi G. Evaluation of regional project to strengthen national health research systems in four countries in West Africa: lessons learned. Health Res Policy Syst. 2017;15(Suppl. 1):46. https://doi.org/10.1186/s12961-017-0214-8 .

Guimarães R, Santos LMP, Angulo-Tuesta A, Serruya SJ. Defining and implementing a national policy for science, technology, and innovation in health: lessons from the Brazilian experience. Cad Saude Publica. 2006;22(9):1775–85. https://doi.org/10.1590/s0102-311x2006000900002 .

Commission on Health Research for Development. Health research: essential link to equity and development. New York: Oxford University Press; 1990.

Inserm 2020 Strategic Plan. Paris: Institut National de la Santé et de la Recherche Médicale; 2015. https://www.inserm.fr/sites/default/files/2017-11/Inserm_PlanStrategique_2016-2020_EN.pdf . Accessed 19 Dec 2019.

Draft National Strategy for Health Research and Innovation. Il-Kalkara: Malta Council for Science and Technology; 2011. https://rio.jrc.ec.europa.eu/en/file/7363/download?token=2MYIdvgP . Accessed 19 Dec 2019.

Matthys B, Murugi J, de Haan S, Mausezahl D, Wyss K. Research for health and health system strengthening in Africa. Record paper 9. Geneva: Council on Health Research for Development; 2009. http://www.cohred.org/downloads/cohred_publications/COHREDRP9_Research%20_for_Health_System%20_Strengthening_in_Africa.pdf . Accessed 1 Jan 2020.

Santoro A, Glonti K, Bertollini R, Ricciardi W, McKee M. Mapping health research capacity in 17 countries of the former Soviet Union and south-eastern Europe: an exploratory study. Eur J Pub Health. 2016;26(2):349–54. https://doi.org/10.1093/eurpub/ckv186.

Senkubuge F, Mayosi BM. The state of the National Health Research system in South Africa. In: Padarath A, English R, editors. South African Health Review 2012/13. Durban: Health Systems Trust; 2013. p. 141–50.

Redman-Maclaren ML, Maclaren DJ, Solomon J, Muse A, Asugeni R, Harrington H, et al. Research workshop to research work: initial steps in establishing health research systems on Malaita, Solomon Islands. Health Res Policy Syst. 2010;8:33. https://doi.org/10.1186/1478-4505-8-33 .

Romero LI, Quental C. The Panamanian health research system: a baseline analysis for the construction of a new phase. Health Res Policy Syst. 2013;11:33. https://doi.org/10.1186/1478-4505-11-33 .

Chinnery F, Dunham KM, van der Linden B, Westmore M, Whitlock E. Ensuring value in health-related research. Lancet. 2018;391(10123):836–7. https://doi.org/10.1016/S0140-6736(18)30464-1 .

Ensuring Value in Research (EViR) Funders’ Collaboration and Development Forum. EViR Funders’ Forum; 2019. www.ensuringvalueinresearch.org . Accessed 19 Dec 2019.

Evidence-informed Policy Network (EVIPNet). Copenhagen: WHO Regional Office for Europe; 2020. http://www.euro.who.int/en/data-and-evidence/evidence-informed-policy-making/evidence-informed-policy-network-evipnet . Accessed 1 Jan 2020.

Hanney SR, González-Block MA. Building health research systems: WHO is generating global perspectives, and who's celebrating national successes? Health Res Policy Syst. 2016;14:90. https://doi.org/10.1186/s12961-016-0160-x .

Miller FA, Patton SJ, Dobrow M, Marshall DA, Berta W. Public involvement and health research system governance: a qualitative study. Health Res Policy Syst. 2018;16:87. https://doi.org/10.1186/s12961-018-0361-6 .

Montorzi G, de Haan S, IJsselmuiden C. Priority setting for research for health: a management process for countries. Geneva: Council on Health Research for Development; 2010. http://www.cohred.org/downloads/Priority_Setting_COHRED_approach_August_2010.pdf . Accessed 1 Jan 2020.

Marais D, Sombié I, Becerra-Posada F, Montorzi G, de Haan S. Governance, priorities and policies in national research for health systems in West Africa. Geneva: Council on Health Research for Development; 2011. https://www.healthresearchweb.org/files/West_Africa_Working_Paper_Final.pdf . Accessed 1 Jan 2020.

Sombié I, Aidam J, Konate B, Some TD, Kambou SS. The state of the research for health environment in the ministries of health of the Economic Community of the West African States (ECOWAS). Health Res Policy Syst. 2013;11:35. https://doi.org/10.1186/1478-4505-11-35 .

Directions for health research in BC. Vancouver: Michael Smith Foundation for Health Research; 2014. https://www.msfhr.org/sites/default/files/BC_health_research_strategy_FINAL.pdf . Accessed 19 Dec 2019.

New Zealand health research strategy 2017–2027. Wellington: Ministry of Business, Innovation and Employment/Ministry of Health; 2017. https://www.health.govt.nz/system/files/documents/publications/nz-health-research-strategy-jun17.pdf . Accessed 1 Jan 2020.

Chanda-Kapata P, Campbell S, Zarowsky C. Developing a national health research system: participatory approaches to legislative, institutional and networking dimensions in Zambia. Health Res Policy Syst. 2012;10:17. https://doi.org/10.1186/1478-4505-10-17 .

Miller FA, Patton SJ, Dobrow M, Berta W. Public involvement in health research systems: a governance framework. Health Res Policy Syst. 2018;16:79. https://doi.org/10.1186/s12961-018-0352-7 .

Viergever RF, Olifson S, Ghaffar A, Terry RF. A checklist for health research priority setting: nine common themes of good practice. Health Res Policy Syst. 2010;8:36. https://doi.org/10.1186/1478-4505-8-36 .

Nason E, Janta B, Hastings G, Hanney S, O'Driscoll M, Wooding S. Health research: making an impact. The economic and social benefits of HRB-funded research. Dublin: Health Research Board; 2008. https://www.hrb.ie/fileadmin/2._Plugin_related_files/Publications/2017_and_earlier_Pubs/Grant_Evaluation_Reports/Health_Research_-_Making_an_Impact.pdf . Accessed 19 Dec 2019.

Buxton M, Hanney S. How can payback from health services research be assessed? J Health Serv Res Policy. 1996;1(1):35–43.

Article   CAS   Google Scholar  

Kristensen-Cabrera AI, Cuervo LG. Cross-sectional study on the utilization of the Pan American Health Organization/World Health Organization policy on research for health. Rev Panam Salud Publica. 2018;42:e77. https://doi.org/10.26633/RPSP.2018.77 .

Hanney SR, González-Block MA. ‘Knowledge for better health’ revisited: the increasing significance of health research systems – a review by departing Editors-in-Chief. Health Res Policy Syst. 2017;15:81. https://doi.org/10.1186/s12961-017-0248-y .

Bates I, Taegtmeyer M, Squire SB, Ansong D, Nhlema-Simwaka B, Baba A, et al. Indicators of sustainable capacity building for health research: analysis of four African case studies. Health Res Policy Syst. 2011;9:14. https://doi.org/10.1186/1478-4505-9-14 .

Lavis JN, Oxman AD, Lewin S, Fretheim A. SUPPORT tools for evidence-informed health policymaking (STP). Health Res Policy Syst. 2009;7(Suppl. 1):I1. https://doi.org/10.1186/1478-4505-7-S1-I1 .

Haynes A, Brennan S, Redman S, et al. Policymakers’ experience of a capacity-building intervention designed to increase their use of research: a realist process evaluation. Health Res Policy Syst. 2017;15:99. https://doi.org/10.1186/s12961-017-0234-4 .

Turner T, El-Jardali F. Building a bright, evidence-informed future: a conversation starter from the incoming editors. Health Res Policy Syst. 2017;15:88. https://doi.org/10.1186/s12961-017-0257-x .

Peters DH, Bhuiya A, Ghaffar A. Engaging stakeholders in implementation research: lessons from the Future Health Systems Research Programme experience. Health Res Policy Syst. 2017;15:104. https://doi.org/10.1186/s12961-017-0269-6 .

Adam P, Ovseiko PV, Grant J, et al. ISRIA statement: ten-point guidelines for an effective process of research impact assessment. Health Res Policy Syst. 2018;16:8. https://doi.org/10.1186/s12961-018-0281-5 .

Milat A, Lee K, Conte K, et al. Intervention Scalability Assessment Tool: a decision support tool for health policy makers and implementers. Health Res Policy Syst. 2020;18:1. https://doi.org/10.1186/s12961-019-0494-2 .

Scott AM, Kolstoe S, Ploem MC, et al. Exempting low-risk health and medical research from ethics reviews: comparing Australia, the United Kingdom, the United States and the Netherlands. Health Res Policy Syst. 2020;18:11. https://doi.org/10.1186/s12961-019-0520-4 .

Smits P, Champagne F. Governance of health research funding institutions: an integrated conceptual framework and actionable functions of governance. Health Res Policy Syst. 2020;18:22. https://doi.org/10.1186/s12961-020-0525-z .

Kalpazidou Schmidt E, Ovseiko PV, Henderson LR, et al. Understanding the Athena SWAN award scheme for gender equality as a complex social intervention in a complex system: analysis of Silver award action plans in a comparative European perspective. Health Res Policy Syst. 2020;18:19. https://doi.org/10.1186/s12961-020-0527-x .

Kamenetzky A, Hinrichs-Krapels S. How do organisations implement research impact assessment (RIA) principles and good practice? A narrative review and exploratory study of four international research funding and administrative organisations. Health Res Policy Syst. 2020;18:6. https://doi.org/10.1186/s12961-019-0515-1 .

Khalid AF, Lavis JN, El-Jardali F, et al. Supporting the use of research evidence in decision-making in crisis zones in low- and middle-income countries: a critical interpretive synthesis. Health Res Policy Syst. 2020;18:21. https://doi.org/10.1186/s12961-020-0530-2 .

Boland L, Kothari A, McCutcheon C, et al. Building an integrated knowledge translation (IKT) evidence base: colloquium proceedings and research direction. Health Res Policy Syst. 2020;18:8. https://doi.org/10.1186/s12961-019-0521-3 .

Article   CAS   PubMed   PubMed Central   Google Scholar  

Conte KP, Davidson S. Using a ‘rich picture’ to facilitate systems thinking in research coproduction. Health Res Policy Syst. 2020;18:14. https://doi.org/10.1186/s12961-019-0514-2 .

Jessani NS, Valmeekanathan A, Babcock C, et al. Exploring the evolution of engagement between academic public health researchers and decision-makers: from initiation to dissolution. Health Res Policy Syst. 2020;18:15. https://doi.org/10.1186/s12961-019-0516-0 .

Slattery P, Saeri AK, Bragge P. Research co-design in health: a rapid overview of reviews. Health Res Policy Syst. 2020;18:17. https://doi.org/10.1186/s12961-020-0528-9 .

Zych MM, Berta WB, Gagliardi AR. Conceptualising the initiation of researcher and research user partnerships: a meta-narrative review. Health Res Policy Syst. 2020;18:24. https://doi.org/10.1186/s12961-020-0536-9 .

Cash-Gibson L, Harris M, Guerra G, et al. A novel conceptual model and heuristic tool to strengthen understanding and capacities for health inequalities research. Health Res Policy Syst. 2020;18:42. https://doi.org/10.1186/s12961-020-00559-z .

Mansoori P, Majdzadeh R, Abdi Z, Rudan I, Chan KY, The Iranian CHNRI Health Research Priority Setting Group, et al. Setting research priorities to achieve long-term health targets in Iran. J Glob Health. 2018;8(2):020702. https://doi.org/10.7189/jogh.08.020702 .

Palmer A, Anya SE, Bloch P. The political undertones of building national health research systems: reflections from the Gambia. Health Res Policy Syst. 2009;7:13. https://doi.org/10.1186/1478-4505-7-13 .

Shergold M, Grant J. Freedom and need: the evolution of public strategy for biomedical and health research in England. Health Res Policy Syst. 2008;6:2. https://doi.org/10.1186/1478-4505-6-2 .

Kok MO, Gyapong JO, Wolffers I, Ofori-Adjei D, Ruitenberg EJ. Towards fair and effective north–south collaboration: realizing a programme for demand-driven and locally led research. Health Res Policy Syst. 2017;15:96. https://doi.org/10.1186/s12961-017-0251-3 .

Editorial. Bringing health research forward. Tanzan J Health Res. 2009;11(4):iii–iv.

Oliver K, Kothari A, Mays N. The dark side of coproduction: do the costs outweigh the benefits for health research? Health Res Policy Syst. 2019;17:33. https://doi.org/10.1186/s12961-019-0432-3 .

Ahmedov M, de Haan S, Sarymsakova B. Strengthening health research systems in Central Asia: a system mapping and consultative process. Working paper 2. Geneva: Council on Health Research for Development; 2007. http://www.cohred.org/downloads/cohred_publications/wp2_CentralAsia.pdf . Accessed 1 Jan 2020.

Hanney SR, Wooding S, Sussex J, et al. From COVID-19 research to vaccine application: why might it take 17 months not 17 years and what are the wider lessons?. Health Res Policy Syst. 2020;18:61.  https://doi.org/10.1186/s12961-020-00571-3 .

WHO Western Pacific: Philippines. PH solidarity trial for COVID-19 treatments receives green light from ethics review body. Press release. WHO. 22 April 2020. https://www.who.int/philippines/news/detail/22-04-2020-ph-solidarity-trial-for-covid-19-treatments-receives-green-light-from-ethics-review-body . Accessed 15 May 2020.

Lane R. Sarah Gilbert: carving a path towards a COVID-19 vaccine. Lancet. 2020;395:1247. https://doi.org/10.1016/S0140-6736(20)30796-0 .

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Acknowledgements

We thank colleagues at WHO’s Regional Office for Europe for the inputs to the original Health Evidence Network Evidence Synthesis. The authors are responsible for the content of this Opinion piece.

The WHO’s Regional Office for Europe funded the Health Evidence Network Evidence Synthesis. The additional literature searching and analysis for this Opinion piece, along with its drafting, was unfunded. Annette Boaz, Kingston University and St George’s University of London, is supported by the National Institute for Health Research (NIHR) Applied Research Collaboration South London (NIHR ARC South London) at King’s College Hospital NHS Foundation Trust. The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.

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SP, LK and SH planned the original phase of the WHO evidence synthesis, including the search strategy. LK led the original literature search and contributed article selection and data extraction and analysis. AB and SH planned the second phase of the evidence synthesis. TJ led the second phase of the literature search and contributed to the article selection and data extraction. AB contributed to the final version of the Health Evidence Network report. SH led the data extraction and analysis and drafting of the report. SH conducted the additional analysis of the literature and initial drafting for this Opinion piece. All authors commented on the Opinion piece and approved the final version.

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The authors have no competing interests to declare. AB is a member of the World Health Organization European Advisory Committee on Health Research. SH was co-editor of Health Research Policy and Systems from 2006 to 2017.

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Hanney, S.R., Kanya, L., Pokhrel, S. et al. How to strengthen a health research system: WHO’s review, whose literature and who is providing leadership?. Health Res Policy Sys 18 , 72 (2020). https://doi.org/10.1186/s12961-020-00581-1

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What has the pandemic revealed about the US health care system — and what needs to change?

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With vaccinations for Covid-19 now underway across the nation, MIT SHASS Communications asked seven MIT scholars engaged in health and health care research to share their views on what the pandemic has revealed about the U.S. health care system — and what needs to change. Representing the fields of medicine, anthropology, political science, health economics, science writing, and medical humanities, these researchers articulate a range of opportunities for U.S. health care to become more equitable, more effective and coherent, and more prepared for the next pandemic.

Dwaipayan Banerjee , associate professor of science, technology, and society

On the heels of Ebola, Covid-19 put to rest a persistent, false binary between diseases of the rich and diseases of the poor. For several decades, health care policymakers have labored under the impression of a great epidemiological transition. This theory holds that the developed world has reached a stage in its history that it no longer needs to worry about communicable diseases. These "diseases of the poor" are only supposed to exist in distant places with weak governments and struggling economies. Not here in the United States.

On the surface, Covid-19 made clear that diseases do not respect national boundaries. More subtly, it tested the hypothesis that the global north no longer need concern itself with communicable disease. And in so doing, it undermined our assumptions about global north health-care infrastructures as paradigmatically more evolved. Over the last decades, the United States has been focused on developing increasingly sophisticated drugs. While this effort has ushered in several technological breakthroughs, a preoccupation with magic-bullet cures has distracted from public health fundamentals. The spread of the virus revealed shortages in basic equipment and hospitals beds, the disproportionate effects of disease on the marginalized, the challenge of prevention rather than cure, the limits of insurance-based models to provide equitable care, and our unacknowledged dependence on the labor of underpaid health care workers.

To put it plainly, the pandemic did not create a crisis in U.S. health care. For many in the United States, crisis was already a precondition of care, delivered in emergency rooms and negotiated through denied insurance claims. As we begin to imagine a "new normal," we must ask questions about the old. The pandemic made clear that the "normal" had been a privilege only for a few well-insured citizens. In its wake, can we imagine a health-care system that properly compensates labor and recognizes health care as a right, rather than a privilege only available to the marginalized when an endemic crisis is magnified by a pandemic emergency? 

Andrea Campbell , professor of political science

No doubt, the pandemic reveals the dire need to invest in public-health infrastructure to better monitor and address public-health threats in the future, and to expand insurance coverage and health care access. To my mind, however, the pandemic’s greatest significance is in revealing the racism woven into American social and economic policy.

Public policies helped create geographic and occupational segregation to begin with; inadequate racist and classist public policies do a poor job of mitigating their effects. Structural racism manifests at the individual level, with people of color suffering worse housing and exposure to toxins, less access to education and jobs, greater financial instability, poorer physical and mental health, and higher infant mortality and shorter lifespans than their white counterparts. Residential segregation means many white Americans do not see these harms.

Structural racism also materializes at the societal level, a colossal waste of human capital that undercuts the nation’s economic growth, as social and economic policy expert Heather McGhee shows in her illuminating book, "The Sum of Us." These society-wide costs are hidden as well; it is difficult to comprehend the counterfactual of what growth would look like if all Americans could prosper. My hope is that the pandemic renders this structural inequality visible. There is little point in improving medical or public-health systems if we fail to address the structural drivers of poor health. We must seize the opportunity to improve housing, nutrition, and schools; to enforce regulations on workplace safety, redlining, and environmental hazards; and to implement paid sick leave and paid family leave, among other changes. It has been too easy for healthy, financially stable, often white Americans to think the vulnerable are residual. The pandemic has revealed that they are in fact central. It’s time to invest for a more equitable future.

Jonathan Gruber , Ford Professor of Economics

The Covid-19 pandemic is the single most important health event of the past 100 years, and as such has enormous implications for our health care system. Most significantly, it highlights the importance of universal, non-discriminatory health insurance coverage in the United States. The primary source of health insurance for Americans is their job, and with unemployment reaching its highest level since the Great Depression, tens of millions of workers lost, at least temporarily, their insurance coverage.

Moreover, even once the economy recovers, millions of Americans will have a new preexisting condition, Covid-19. That’s why it is critical to build on the initial successes of the Affordable Care Act to continue to move toward a safety net that provides insurance options for all without discrimination.

The pandemic has also illustrated the power of remote health care. The vast majority of patients in the United States have had their first experience with telehealth during the pandemic and found it surprisingly satisfactory. More use of telehealth can lead to increased efficiency of health care delivery as well as allowing our system to reach underserved areas more effectively.

The pandemic also showed us the value of government sponsorship of innovation in the health sciences. The speed with which the vaccines were developed is breathtaking. But it would not have been possible without decades of National Institute of Health investments such as the Human Genome Project, nor without the large incentives put in place by Operation Warp Speed. Even in peacetime, the government has a critical role to play in promoting health care innovation

The single most important change that we need to make to be prepared for the next pandemic is to recognize that proper preparation is, by definition, overpreparation. Unless we are prepared for the next pandemic that doesn’t happen, we won’t possibly be ready for the next pandemic that does.

This means working now, while the memory is fresh, to set up permanent, mandatorily funded institutions to do global disease surveillance, extensive testing of any at-risk populations when new diseases are detected, and a permanent government effort to finance underdeveloped vaccines and therapeutics.

Jeffrey Harris , professor emeritus of economics and a practicing physician The pandemic has revealed the American health care system to be a non-system. In a genuine system, health care providers would coordinate their services. Yet when Elmhurst Hospital in Queens was overrun with patients, some 3,500 beds remained available in other New York hospitals. In a genuine system, everyone would have a stable source of care at a health maintenance organization (HMO). While our country has struggled to distribute the Covid-19 vaccine efficiently and equitably, Israel, which has just such an HMO-based system, has broken world records for vaccination.

Germany, which has all along had a robust public health care system, was accepting sick patients from Italy, Spain, and France. Meanwhile, U.S. hospitals were in financial shock and fee-for-service-based physician practices were devastated. We need to move toward a genuine health care system that can withstand shocks like the Covid-19 pandemic. There are already models out there to imitate. We need to strengthen our worldwide pandemic and global health crisis alert systems. Despite concerns about China’s early attempts to suppress the bad news about Covid-19, the world was lucky that Chinese investigators posted the full genome of SARS-CoV-2 in January 2020 — the singular event that triggered the search for a vaccine. With the recurrent threat of yet another pandemic — after H1N1, SARS, MERS, Ebola, and now SARS-Cov-2 — along with the anticipated health consequences of global climate change, we can’t simply cross our fingers and hope to get lucky again.

Erica Caple James , associate professor of medical anthropology and urban studies The coronavirus pandemic has revealed some of the limits of the American medical and health care system and demonstrated many of the social determinants of health. Neither the risks of infection nor the probability of suffering severe illness are equal across populations. Each depends on socioeconomic factors such as type of employment, mode of transportation, housing status, environmental vulnerability, and capacity to prevent spatial exposure, as well as “preexisting” health conditions like diabetes, obesity, and chronic respiratory illness.

Such conditions are often determined by race, ethnicity, gender, and “biology,” but also poverty, cultural and linguistic facility, health literacy, and legal status. In terms of mapping the prevalence of infection, it can be difficult to trace contacts among persons who are regular users of medical infrastructure. However, it can be extraordinarily difficult to do so among persons who lack or fear such visibility, especially when a lack of trust can color patient-clinician relationships.

One’s treatment within medical and health care systems may also reflect other health disparities — such as when clinicians discount patient symptom reports because of sociocultural, racial, or gender stereotypes, or when technologies are calibrated to the norm of one segment of the population and fail to account for the severity of disease in others.

The pandemic has also revealed the biopolitics and even the “necropolitics” of care — when policymakers who are aware that disease and death fall disproportionately in marginal populations make public-health decisions that deepen the risks of exposure of these more vulnerable groups. The question becomes, “Whose lives are deemed disposable?” Similarly, which populations — and which regions of the world — are prioritized for treatment and protective technologies like vaccines and to what degree are such decisions politicized or even racialized?

Although no single change will address all of these disparities in health status and access to treatment, municipal, state, and federal policies aimed at improving the American health infrastructure — and especially those that expand the availability and distribution of medical resources to underserved populations — could greatly improve health for all.

Seth Mnookin , professor of science writing

The Covid-19 pandemic adds yet another depressing data point to how the legacy and reality of racism and white supremacy in America is lethal to historically marginalized groups. A number of recent studies have shown that Black, Hispanic, Asian, and Native Americans have a significantly higher risk of infection, hospitalization, and death compared to white Americans.

The reasons are not hard to identify: Minority populations are less likely to have access to healthy food options, clean air and water, high-quality housing, and consistent health care. As a result, they’re more likely to have conditions that have been linked to worse outcomes in Covid patients, including diabetes, hypertension, and obesity.

Marginalized groups are also more likely to be socioeconomically disadvantaged — which means they’re more likely to work in service and manufacturing industries that put them in close contact with others, use public transportation, rely on overcrowded schools and day cares, and live in closer proximity to other households. Even now, more vaccines are going to wealthier people who have the time and technology required to navigate the time-consuming vaccine signup process and fewer to communities with the highest infection rates.

This illustrates why addressing inequalities in Americans’ health requires addressing inequalities that infect every part of society. Moving forward, our health care systems should take a much more active role in advocating for racial and socioeconomic justice — not only because it is the right thing to do, but because it is one of the most effective ways to improve health outcomes for the country as a whole.

On a global level, the pandemic has illustrated that preparedness and economic resources are no match for lies and misinformation. The United States, Brazil, and Mexico have, by almost any metric, handled the pandemic worse than virtually every other country in the world. The main commonality is that all three were led by presidents who actively downplayed the virus and fought against lifesaving public health measures. Without a global commitment to supporting accurate, scientifically based information, there is no amount of planning and preparation that can outflank the spread of lies.

Parag Pathak , Class of 1922 Professor of Economics   The pandemic has revealed the strengths and weaknesses of America’s health care systems in an extreme way. The development and approval of three vaccines in roughly one year after the start of the pandemic is a phenomenal achievement. At the same time, there are many innovations for which there have been clear fumbles, including the deployment of rapid tests and contact tracing.   The other aspect the pandemic has made apparent is the extreme inequality in America’s health systems. Disadvantaged communities have borne the brunt of Covid-19 both in terms of health outcomes and also economically. I’m hopeful that the pandemic will spur renewed focus on protecting the most vulnerable members of society. A pandemic is a textbook situation in economics of externalities, where an individual’s decision has external effects on others. In such situations, there can be major gains to coordination. In the United States, the initial response was poorly coordinated across states. I think the same criticism applies globally. We have not paid enough attention to population health on a global scale. One lesson I take from the relative success of the response of East Asian countries is that centralized and coordinated health systems are more equipped to manage population health, especially during a pandemic. We’re already seeing the need for international cooperation with vaccine supply and monitoring of new variants. It will be imperative that we continue to invest in developing the global infrastructure to facilitate greater cooperation for the next pandemic.

Prepared by MIT SHASS Communications Editor and designer: Emily Hiestand Consulting editor: Kathryn O'Neill

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Confronting Challenges in the US Health Care System : Potential Opportunity in a Time of Crisis

• 1 Deputy Editor, JAMA Health Forum
• 2 Department of Health Policy, Vanderbilt University School of Medicine, Nashville, Tennessee
• Editorial The Near-Term Future of Health Care Reform Ezekiel J. Emanuel, MD, PhD JAMA
• Editorial Crucial Questions for US Health Policy in the Next Decade John Z. Ayanian, MD, MPP JAMA

The sheer number of challenges facing the Biden Administration and the 117th Congress in the health policy sphere is staggering, as is the range of potential solutions offered by the authors of the Viewpoints in the JAMA Health Policy series. 1 The most pressing challenges involve addressing the global COVID-19 pandemic. Yet policy makers would be remiss if they did not leverage this opportunity to also address the fundamental problems with the US health system laid bare by the nation’s response to the pandemic. These include major challenges related to health insurance coverage, the solvency of publicly funded programs, the stability of the health care safety net, market power and consolidation, inequities in health care access and outcomes, public health infrastructure, and the failure to effectively use technology to help counteract these problems.

Personal health crises, such as experiencing a myocardial infarction, can spur patients and their care teams to work to improve underlying health habits and conditions that contributed to the health event. Similarly, the havoc wrought by the COVID-19 pandemic is a clarion call to improve US health care coverage, financing, and organization. The status quo practices of the health system in the US—like poor health habits of a patient with heart disease—have left it susceptible to poor outcomes.

The high cost of the US health care system is its biggest weakness. In the US, national expenditures on health care goods and services were approximately $4 trillion in 2020, accounting for an estimated 18% of gross domestic product. 2 High prices for care explain a large part of the difference in spending between the US and other developed countries. Surprise billing is just one aspect of the pricing problem, but one that, as Colla 3 describes, illustrates many troubling trends in medicine. Consolidation of hospitals, insurers, and large and small practices has accelerated during the pandemic and as Dafny 4 explains, can be expected to lead to higher prices in the commercial market in the future. Chernew 5 elegantly discusses how market power and consolidation in the health care industry, exacerbated by the pandemic, could lead to still higher prices and a cycle of harms for individuals, governments, and society as a whole.

Those harms include incomplete insurance coverage, both in terms of numbers of people covered and the generosity of that coverage, due to high prices that lead to high insurance premiums. Higher premiums have meant that many people who are not eligible for subsidies on the health insurance exchanges find insurance unaffordable. The Biden campaign proposals to extend subsidies to higher income groups are designed to help solve this problem but will not address its root causes. High premiums have also contributed to wage stagnation for US workers with employment-based health insurance and to higher cost-sharing, which has been shown to reduce access to necessary care.

In addition, higher health care costs put pressure on state and federal budgets. As Gee et 6 al discuss, 12 states have not chosen to expand Medicaid to date, and a concern that even being responsible for 10% of the increased costs could be burdensome is one of the reasons cited for this choice. Frank and Neuman 7 emphasize that the looming deficits in the Medicare Part A Trust Fund will also put pressure on federal policy makers to find sources of new revenues or to cut benefits or payment rates. Perhaps even more important, as described by Venkataramani and colleagues, 8 high health care prices contribute to limited budgets for other social goods like education and housing that could improve health outcomes, possibly even more than direct spending on health care.

Similarly, it is now clear that the US has spent an increasing amount of resources on health care, but spending on public health has been inadequate. Investments in surveillance officers and systems and in stockpiles of equipment and medications are less appealing ways to spend public resources than covering new drugs or services. The pandemic has revealed the shortcomings of the US public health infrastructure and illustrates that neglecting to reinvest in public health after a pandemic will more severely compromise the ability to respond effectively to the next public health crisis. 9 Although none of the Viewpoints in this series focused on specific public health proposals, they should be part of every discussion of improving health and health care going forward. Public health policy must be central not only to health policy, but to economic policy and national security policy as well.

High health care prices might be less of a problem if the US health care system was uniformly delivering high-quality care and yielding high value. The US does prioritize health as a society and voters are reluctant to endorse solutions that limit access to the latest innovations in health care. However, a fundamental shortcoming in the US health care system is the tendency to create and perpetuate incentives to deliver higher-margin treatments and specialty care instead of primary care, preventive care, and public health. The central need to refine the focus on value was highlighted in many articles in the series.

Several Viewpoints in the Health Policy series provided worthy suggestions and policy recommendations the could help the US health care system recover from the current crises stronger. Berwick and Gilfillan 10 call for speeding the cycle time of demonstrations under the Center for Medicare and Medicaid Innovation, Dafny 4 suggests examining mergers and acquisitions more closely, and Chernew 5 proposes implementing “backstop” prices in commercial markets.

Another important step will be using data and technology strategically. During the pandemic, the health care system rapidly adopted telemedicine in clinical care. Millions of people accessed readily available data dashboards that illustrated the course of the pandemic and the extent of infections in specific areas, and many used the information to demand better and more equal care. As described by Adler-Milstein, 11 a digital transformation in the US health care system could make it possible to continuously monitor and use real-time data to inform preparedness and population-level care planning. Such data systems also could be used to help address and reduce disparities and inequities in care and to improve health system transparency, including around prices. Moreover, these systems could save money and reduce the reporting and patient tracking burdens on health care centers, physicians, and other clinicians participating in value-based care; administrative costs are estimated by Kocher et al 12 at $2500 per person per year.

Can commitments to improving health care coverage, financing, and organization be made in the midst of a pandemic and an affordability crisis? There are reasons to hope the answer is yes. The pandemic has substantially changed care patterns, shown the risks of fee-for-service payment and a reliance on highly reimbursed surgical procedures, and revealed the need for a stronger public health infrastructure and greater preparedness. Health systems will be increasingly held accountable for ensuring delivery of high-value care and for addressing health equity issues in ways that do not rely on outdated models of care. No one could have imagined or would wish the current economic, societal, or health care challenges of the COVID-19 pandemic on a new administration or Congress. But all have hope that leaders can confront these crises as potential opportunities for developing solutions to address the ongoing major challenges in the US health care system.

Correction: This article was updated on June 7, 2021, to correct the spelling of Dr Venkataramani’s name in the fifth paragraph.

Corresponding Author: Melinda B. Buntin, PhD, Department of Health Policy, Vanderbilt University School of Medicine, 2525 West End Ave, Ste 1200, Nashville, TN 37203 ( [email protected] ).

Conflict of Interest Disclosures: Dr Buntin reported being an unpaid board member of the Harvard Medical Faculty Practice in Boston, Massachusetts.

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Buntin MB. Confronting Challenges in the US Health Care System : Potential Opportunity in a Time of Crisis . JAMA. 2021;325(14):1399–1400. doi:10.1001/jama.2021.1471

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United States: Health System Review

Affiliations.

• 1 University of California, Los Angeles.
• 2 University of Texas-Houston.
• 3 University of Central Florida.
• 4 Virginia Commonwealth University.
• PMID: 33527901

This analysis of the US health system reviews the developments in organization and governance, health financing, healthcare provision, health reforms and health system performance. The US health system has both considerable strengths and notable weaknesses. It has a large and well-trained health workforce and a wide range of high-quality medical specialists, as well as secondary and tertiary institutions, a robust health sector research programme and, for selected services, among the best medical outcomes in the world. But it also suffers from incomplete coverage of its citizenry, health expenditure levels per person far exceeding all other countries, poor measures on many objective and subjective measures of quality and outcomes, and an unequal distribution of resources and outcomes across the country and among different population groups. It is difficult to determine the extent to which deficiencies are health-system related, though it is clear that at least some of the problems are a result of poor access to care. The adoption of the Affordable Care Act in 2010 resulted in greatly improved coverage through subsidies for the uninsured to purchase private insurance, expanded eligibility for Medicaid (in some states), and greater protection for insured persons. Furthermore, primary care and public health received increased funding, and quality and expenditures were addressed through a range of measures such as financial rewards for providing higher-value care. At the same time, a change in political administration resulted in subsequent efforts to scale back the legislation. Many key issues remain, including further reducing the number of uninsured people, alleviating some of the burdensome patient cost-sharing requirements, and considering some new cost-containment methods such as allowing the government to negotiate drug prices with pharmaceutical manufacturers. The direction of future health policy will almost certainly depend on which political party is in power.

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5 Critical Priorities for the U.S. Health Care System

• Marc Harrison

A guide to making health care more accessible, affordable, and effective.

The pandemic has starkly revealed the many shortcomings of the U.S. health care system — as well as the changes that must be implemented to make care more affordable, improve access, and do a better job of keeping people healthy. In this article, the CEO of Intermountain Healthcare describes five priorities to fix the system. They include: focus on prevention, not just treating sickness; tackle racial disparities; expand telehealth and in-home services; build integrated systems; and adopt value-based care.

Since early 2020, the dominating presence of the Covid-19 pandemic has redefined the future of health care in America. It has revealed five crucial priorities that together can make U.S. health care accessible, more affordable, and focused on keeping people healthy rather than simply treating them when they are sick.

• Marc Harrison , MD, is president and CEO of Salt Lake City-based Intermountain Healthcare.

Partner Center

How geography acts as a structural determinant of health

In unincorporated communities in the United States-Mexico borderlands, historically and socially marginalized populations become invisible to the healthcare system, showing that geography acts as a structural determinant of health for low-income populations. So concludes a study by a University of California, Riverside, team that focused its attention on the borderland in Southern California, specifically, eastern Coachella Valley.

From September to December 2020, the team, led by Ann Cheney, an associate professor of social medicine, population, and public health in the School of Medicine, conducted interviews in collaboration with María Pozar, a community investigator and CEO of Conchita Servicios de la Comunidad, with 36 Latinx and Indigenous Mexican caregivers of children with asthma or respiratory distress. The researchers found communities in the "colonias" (unincorporated areas in the borderlands) lack basic critical infrastructure including healthcare access.

The U.S.-Mexico borderland is home to nearly 2.7 million Hispanic or Latinx individuals. The immigrant population in the colonias has limited English proficiency, health literacy levels, and income, and lower levels of formal education. Many are undocumented.

"Our work shows the importance of geography in health and how geography acts as a structural determinant of health," Cheney said. "For example, foreign-born caregivers who speak Spanish or Purépecha prefer to take their children across the U.S.-Mexico border for respiratory health care because physicians there provide them with a diagnosis and treatment plan that they perceive improves their children's health."

The study, published in the journal Social Science & Medicine , found the caregivers perceive U.S.-based physicians as not providing them with sufficient information since most physicians do not speak their language and do not adequately listen to or are dismissive of their concerns about their children's respiratory health. The caregivers perceive Mexican-based physicians as providing them with a diagnosis and treatment plan, whereas U.S.-based physicians often prescribe medications and provide no concrete diagnosis.

"Further, only those with legal documentation status can cross the border, which contributes to disparities in children's respiratory health," Cheney said. "Thus, caregivers without legal status in the U.S. must access healthcare services in the U.S. for their children and receive, what these caregivers perceive, as suboptimal care."

Cheney added she was surprised to learn that caregivers who did not have legal documentation status in the U.S. asked trusted family and friends to take their children across the border to receive healthcare services for childhood asthma and related conditions.

"Geography, meaning living in unincorporated communities, harms health," she said. "Geography and the politics of place determines who can and cannot cross borders."

Study participants discussed the distance they needed to travel to pediatric specialty care for the care and management of their children's respiratory health problems. Some commented on the lack of interaction and communication with physicians during medical visits. Some participants commented on the lack of physicians' knowledge about the connections between their children's exposure to environmental hazards and poor respiratory health and allergic symptoms.

The research took place in four unincorporated rural communities -- Mecca, Oasis, Thermal, and North Shore -- in eastern Coachella Valley, along the northern section of the Salton Sea. People living in the colonias here are subject to the health effects of environmental hazards. Many are farmworkers living and working in the nearby agricultural fields. Most of the workforce lives in mobile parks and below the federal poverty line.

"In addition to toxic water and dust from the Salton Sea, other environmental health hazards, such as agriculture pesticide exposure, waste processing facilities, and unauthorized waste dumps, also contribute to this community's high incidence of poor respiratory health," said Gabriela Ortiz, the first author of the research paper and a graduate student in anthropology who works with Cheney. "These communities are vulnerable to the policies and governing decisions around exposure to environmental hazards and infrastructure development. The absence of infrastructure and lack of healthcare infrastructure limits their access to primary care and specialty care services."

Ortiz explained that anthropologists and social scientists have long argued that environmental injustices are a product of structural violence.

"This is indirect violence caused by social structures and institutions that prevent individuals from meeting their basic needs because of political economic domination and class-based exploitation," she said. "Understanding the complex interplay between geography, borderlands, and health is essential for coming up with effective public health policy and interventions."

The title of the research paper is "Seeking care across the US-Mexico border: The experiences of Latinx and Indigenous Mexican caregivers of children with asthma or respiratory distress."

Cheney, Ortiz, and Pozar were joined in the study by Ashley Moran and Sophia Rodriquez of UCR.

The study was funded by the National Institutes of Health/National Institute of Minority Health and Health Disparities.

• Health Policy
• Today's Healthcare
• Children's Health
• Environmental Awareness
• Environmental Policy
• Public Health
• Poverty and Learning
• Social Issues
• Epidemiology
• Mid-Atlantic United States flood of 2006
• Social inclusion

Story Source:

Materials provided by University of California - Riverside . Original written by Iqbal Pittalwala. Note: Content may be edited for style and length.

Journal Reference :

• Gabriela Ortiz, Sophia Rodriguez, María Pozar, Ashley Moran, Ann Cheney. Seeking care across the US-Mexico border: The experiences of Latinx and Indigenous Mexican caregivers of children with asthma or respiratory distress . Social Science & Medicine , 2024; 347: 116736 DOI: 10.1016/j.socscimed.2024.116736

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EDITORIAL article

This article is part of the research topic.

The Impact of the COVID-19 Pandemic on Dermatology Patients: Diagnosis, Treatment, and Prognosis

Editorial: The Impact of the COVID-19 Pandemic on Dermatology Patients: Diagnosis, Treatment, and Prognosis Provisionally Accepted

• 1 Department of Dermatology, Xiangya Hospital, Central South University, China
• 2 Furong Laboratory, China
• 3 National Engineering Research Center of Personalized Diagnostic and Therapeutic Technology, China
• 4 Hunan Key Laboratory of Skin Cancer and Psoriasis, Hunan Engineering Research Center of Skin Health and Disease, Xiangya Hospital, Central South University, China
• 5 National Clinical Research Center for Geriatric Disorders, Xiangya Hospital, Central South University, China

The final, formatted version of the article will be published soon.

The coronavirus disease 2019 (COVID-19) pandemic has posed a profound impact on the global healthcare systems, including the field of dermatology [1,2]. The causative virus, SARS-CoV-2, primarily targets the respiratory system and compromises the immune system, which can trigger immune-related skin disorders or aggravate pre-existing skin conditions [3][4][5]. Concurrently, the pandemic has reshaped medical practice and patient behaviors worldwide, leading to a notable reduction in dermatology admissions and extended hospital stays for severe cases due to concerns about hospitalization and associated treatment [6,7].Moreover, vaccination against COVID-19 have been associated with dermatological manifestations, including dermatomyositis and new or recurrent immune-related skin diseases [8][9][10][11]. This editorial introduces a collection of seven papers that delve into the impact of the COVID-19 pandemic and COVID-19 vaccines on the diagnosis, treatment, and outcomes of dermatological conditions.In a conprehensive retrospective study, Kalanj et al. analyzed the total number of hospitalized patients with skin diseases, as well as those who underwent conservative treatment and surgical interventions, comparing periods before and during the COVID-19 pandemic [12]. Their findings highlight a significant reduction in hospitalizations and surgical procedures (with the exception of breast reconstruction) during the pandemic. This reduction is largely attributable to the state-enacted pandemic prevention and control measures, including social distancing, travel restrictions, and partial or complete lockdowns. Apostu et al. conducted a retrospective cohort study focusing on the number of diagnosed melanoma patients before and after the pandemic, as well as the age, gender, histological characteristics of confirmed cases [13]. They observed a substantial decline in the incidence of new melanoma cases following the COVID-19 pandemic. Additionally, the study found that patients diagnosed with melanoma during the pandemic were older and exhibited more severe prognostic features, such as higher Breslow indexes, increased mitotic counts, and greater ulceration and thickness. These findings suggest that the pandemic has not deterred patients with more aggressive forms of melanoma from seeking treatment, despite the overall decrease in healthcare engagement. This discovery serves as a reminder for dermatology clinicians to inquire about patients' recent vaccination history when treating patients with AIBDs. Similarly, Ghanaapisheh et al. noted a possible association between COVID-19 vaccinations, especially mRNA vaccines, and the occurrence of bullous pemphigoid (BP) [16]. Notably, the majority of BP patients remain unaffected by COVID-19 vaccinations and even those experiencing worsening conditions typically do not face severe side effects, highlighting the evidence-based safety of vaccines. Olszewska et al.'s reviewed the potential link between COVID-19 vaccination and primary cutaneous lymphoma (CL) [17]. Their analysis of data from 24 patients across various studies indicates that primary cutaneous CD30-positive lymphoproliferative disorders are the most prevalent type of CL following COVID-19 vaccination. Ghanaapisheh et al. also highlighted the potential risk of mRNA vaccine induced-CL [16]. Therefore, researchers specifically advise patients with a history of lymphoproliferative diseases to monitor their health closely post-COVID19 vaccination and to remain vigilant for any signs of disease progression. spontaneous urticaria (CSU) [18], observing a significant increase in the median Urticaria Activity Score post-vaccination compared to pre-vaccination levels. Their study also documented cases where individuals developed vascular edema and allergic reactions subsequent to receiving the vaccine. These findings emphasize the potential side effects associated with COVID-19 vaccines. Dermatologists are therefore urged to remain vigilant and consider the possibility of new or recurring immune-related skin conditions in patients who have been vaccinated against COVID-19.In summary, this research topic outlines the multifaceted effects of the COVID-19 pandemic on the occurrence, development, diagnosis, and treatment of various skin diseases.Firstly, there has been a notable decline in the total number of hospitalized patients with skin diseases and in surgical patients, which provides valuable data for hospitals looking to optimize their service system structure. Secondly, there appears to be an increase in the aggressiveness of melanoma during the pandemic, likely due to delays in diagnosis and treatment. Thirdly, the use of biological agents targeting IL-17 and IL-23 has proven more effective than those targeting TNF-α during pandemic, for reasons yet to be determined.Finally, there is a suggested link between COVID-19 vaccination and the onset of autoimmune bullous diseases, chronic spontaneous urticaria, or primary skin lymphoma.Exploring the potential mechanisms behind these associations could enhance our understanding of the development and progression of these conditions.

Keywords: COVID-19, Dermatology, diagnosis, Treatment, prognosis

Received: 17 Apr 2024; Accepted: 22 Apr 2024.

Copyright: © 2024 Deng, Huang, Guo and Chen. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY) . The use, distribution or reproduction in other forums is permitted, provided the original author(s) or licensor are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

* Correspondence: Mx. Guangtong Deng, Department of Dermatology, Xiangya Hospital, Central South University, Changsha, Hunan Province, China

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• Open access
• Published: 25 April 2024

“Access to healthcare is a human right”: a constructivist study exploring the impact and potential of a hospital-community partnered COVID-19 community response team for Toronto homeless services and congregate living settings

• Vivetha Thambinathan 1 ,
• Suvendrini Lena 1 , 2 ,
• Jordan Ramnarine 1 ,
• Helen Chuang 1 ,
• Luwam Ogbaselassie 3 ,
• Marc Dagher 1 , 4 ,
• Elaine Goulbourne 1 ,
• Sheila Wijayasinghe 1 ,
• Jessica Bawden 1 ,
• Logan Kennedy 1 &
• Vanessa Wright 1  

BMC Health Services Research volume  24 , Article number:  526 ( 2024 ) Cite this article

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Individuals experiencing homelessness face unique physical and mental health challenges, increased morbidity, and premature mortality. COVID -19 creates a significant heightened risk for those living in congregate sheltering spaces. In March 2020, the COVID-19 Community Response Team formed at Women’s College Hospital, to support Toronto shelters and congregate living sites to manage and prevent outbreaks of SARS-CoV-2 using a collaborative model of onsite mobile testing and infection prevention. From this, the Women’s College COVID-19 vaccine program emerged, where 14 shelters were identified to co-design and support the administration of vaccine clinics within each shelter. This research seeks to evaluate the impact of this partnership model and its future potential in community-centered integrated care through three areas of inquiry: (1) vaccine program evaluation and lessons learned; (2) perceptions on hospital/community partnership; (3) opportunities to advance hospital-community partnerships.

Constructivist grounded theory was used to explore perceptions and experiences of this partnership from the voices of shelter administrators. Semi-structured interviews were conducted with administrators from 10 shelters using maximum variation purposive sampling. A constructivist-interpretive paradigm was used to determine coding and formation of themes: initial, focused, and theoretical.

Data analysis revealed five main categories, 16 subcategories, and one core category. The core category “access to healthcare is a human right; understand our communities” emphasizes access to healthcare is a consistent barrier for the homeless population. The main categories revealed during a time of confusion, the hospital was seen as credible and trustworthy. However, the primary focus of many shelters lies in housing, and attention is often not placed on health resourcing, solidifying partnerships, accountability, and governance structures therein. Health advocacy, information sharing tables, formalized partnerships and educating health professionals were identified by shelter administrators as avenues to advance intersectoral relationship building.

Hospital-community programs can alleviate some of the ongoing health concerns faced by shelters – during a time of COVID-19 or not. In preparation for future pandemics, access to care and cohesion within the health system requires the continuous engagement in relationship-building between hospitals and communities to support co-creation of innovative models of care, to promote health for all.

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Introduction

Individuals experiencing homelessness face unique physical and mental health challenges, increased morbidity and premature mortality [ 1 , 2 ]. In Canada, it is estimated that 235,000 individuals experience homelessness annually, and 180,000 use emergency shelters each night [ 3 ]. Emergency shelters in Canada, also known as homeless shelters and congregate living facilities, support a diverse population of men, women, families, youth, newcomers, LGBTQ2S individuals and elderly [ 4 ]. Crowding within shared living spaces in shelters creates heightened risk for infectious disease outbreaks [ 5 ].

This heightened risk was demonstrated early in the COVID-19 pandemic when cases of COVID-19 surged among homeless people in Toronto. At one Toronto shelter, 40% of shelter residents tested positive for severe acute respiratory syndrome coronavirus 2 (SARS-CoV2) in a single onsite testing event in April 2020 [ 6 ]. People who are homeless are also at risk of more severe outcomes from COVID-19 infection. Individuals with a recent history of homelessness diagnosed with COVID-19, were 20 times more likely to be admitted to hospital, ten times more likely to require critical care and five times more likely to die of COVID-19, than those housed in Ontario communities [ 7 ]. Access to preventative population health measures demonstrate similar health disparity for the underhoused population. In September 2021, six months after COVID vaccines had become available to the Ontario population, 61.4% of individuals with a recent history of homelessness had received at least one COVID-19 vaccine, compared to 86.6% of the general population [ 8 ].

Primary care is the critical entry point for care related and unrelated to COVID-19 [ 9 ]. Access to primary care is essential to improving the health of those who are underhoused, yet a survey conducted in 2011, revealed less than half of Toronto’s homeless population identified having a primary care provider [ 10 ]. Models of primary care delivery for Toronto’s underhoused population include onsite clinics within homeless shelters, drop-in centres and mobile buses, all with varied funding models, catchments and ties to an array of organizational health partners, such as Inner City Health Associates, Parkdale Queen West Community Health Centre, and Safe Spaces & Care for the Homeless [ 11 ]. Despite the foundational role primary care plays within the health system, it was not identified as a formal platform for the provision of COVID-19 testing, infection control and COVID-19 vaccinations in the Toronto homeless population. Public Health Ontario privileged local public health authorities with vaccine delivery, rather than relying on existing primary care providers; this decision was controversial [ 12 , 13 , 14 ]. Rather, hospital, community health and social care organizations joined together in March 2020 and formed the Shelter and Congregate Support Coordination Table (SCSCT), created by Ontario Health, the regional health authority, in response to the surge of COVID-19 in homeless shelters.

Women’s College Hospital (WCH) is an ambulatory care facility situated in downtown Toronto. In March 2020, WCH set up one of Toronto’s 14 COVID-19 assessment centres (CACs) to facilitate and support free testing for SARS-CoV-2. The COVID-19 Community Response Team (CRT) was formed by a group of health care providers at WCH, in April 2020, as an extension of the CAC. The CRT routinely participated in SCSCT meetings and underwent cycles of adaptation to improve the model as the pandemic evolved [ 15 ]. The primary goal of the CRT was to support Toronto shelters, congregate living settings and supporting organizations across Toronto to manage and prevent outbreaks of SARS-CoV-2 using a comprehensive collaborative model through onsite mobile testing; supporting the management and prevention of outbreaks; and providing infection prevention and control training and guidance [ 15 ]. In total, CRT utilized this model of care through engaging with 49 shelter and congregate living sites from April 2020 to April 2021.

Over the course of the pandemic, SCSCT continued to provide operational guidance for health partners, particularly as COVID-19 vaccines became available. Geographic boundaries were eventually assigned for Toronto health partners to work within, based on their location. WCH was assigned to the mid-west part of Toronto. Fourteen shelter partners were identified for the WCH vaccine delivery program. Ten of these shelters had collaborative relationships with WCH prior to the pandemic.

Local vaccine procurement, administrative supports and processes were supported by a regional hospital partner, University Health Network. The WCH COVID-19 shelter vaccine program ran from March 2021 to September 2021 offering first, second and booster vaccine doses. Clinic teams ranged from utilizing eight clinicians to administer over 300 vaccines in a single clinic, to a solo clinician administering less than 20 vaccines, all within homeless shelters. Clinic frequency ranged from every one to three months. In total, 2300 vaccines were administered across the 14 sites. Clinic preparation was supported by the CRT shelter lead who liaised with a shelter administrator in advance of each clinic to set dates, review clinic flow, support any questions and, if possible, conduct a site visit in advance. Each supporting clinician (vaccinator) attended a single training on trauma informed care and cultural sensitivity before engaging in COVID-19 vaccine outreach. In addition, clinicians were briefed in advance of each clinic on shelter demographics, languages spoken, layout and relationship with WCH.

Studies examining hospital partnerships for community or population health have increased in the past five years [ 16 ]. Qualitative study findings in a systematic review on hospital-community partnerships for population health suggest these partnerships hold promise for breaking down silos, improving communication across sectors, and ensuring appropriate interventions for specific populations [ 16 ]. For example, implementation of a COVID-19 community-academic partnership model, in predominantly Black, Latinx, and otherwise racialized and/or low-income communities in San Francisco, California, was shown to be effective in creating a shared leadership and facilitating sustained linkages between partners [ 17 ]. Moreover, offering COVID-19 vaccines for the underhoused through known, hyperlocal and low barrier approaches, like community health workers and drop-in centres, has demonstrated increased trust among vaccine providers and recipients and vaccine uptake.

In this regard, the establishment of hospital-shelter partnerships offers a unique opportunity to provide culturally relevant, needs-based healthcare services to transitional housing settings. This research seeks to evaluate the impact and importance of the partnership model and its future potential. The overarching question addressed in this study is: What were the overall perceptions of shelter workers in this hospital-community partnership and strategy? Additional questions for analysis include: What were barriers, facilitators, and lessons learned throughout the process? And how can this partnership between the hospital and shelters be sustained in the future to fulfill needs beyond COVID-19?

Theoretical approach & study design

Epistemically, we approach this research with a health equity orientation, understanding that we have a responsibility as health professionals to provide expanded support to under-resourced individuals within the healthcare system. Through conversations with health partners, WCH acknowledged this need to deliver partnered programming (WCH shelter vaccine program) to combat the disproportionate effects of COVID-19 on homeless populations. Thus, this project is rooted from a social accountability standpoint; our research team believes hospitals should prioritize community partnerships to identify and deliver care based upon people’s needs within communities served.

This research project is located within a constructivist/interpretivist paradigm. In this paradigm, ontological assumptions are treated as ‘knowledge’ obtained by participating subjectively in a world of meanings created by individuals; all findings are seen as co-creations by both participant and researcher [ 18 ]. Constructivist grounded theory (CGT) is a qualitative research methodology used to understand and explore perceptions and construct theories about a social phenomenon, grounded in participants’ own experiences and words [ 19 ]. Theoretical data on the perceptions of hospital-community COVID-19 partnership are limited. In this study involving the voices of shelter administrators and staff, we chose CGT to explore and deepen analyses around perceptions and experiences of this hospital-community COVID-19 partnership strategy. CGT methodology is equipped to support a theory formation process most appropriately fitting the participants’ statements [ 20 , 21 ]. CGT also considers and works to minimize the power asymmetries between researcher and participant, as well as showcase the knowledge asymmetries on both ends.

Participant recruitment

This research was conducted with staff and administrators from shelters and congregate settings, whose organizations partnered with the WCH vaccine program to provide COVID vaccination for shelters between March 2021 to September 2021. As previously mentioned, prior on the onset of the WCH shelter vaccine program, COVID testing and infection, prevention and control education was also provided at many of these congregate living sites. Depending on the shelter organization, provision of COVID vaccines was either limited to clients only or directed at both clients and staff. To provide data richness and diversify participants’ experiences, we used maximum variation purposive sampling in our study [ 22 ]. The principal investigator (VW) reached out to shelter staff and administrators through email, inviting them to take part in a key informant interview with the research coordinator (VT). A total of 10 participants from 10 different organizations took part in this study. As a project involving quality improvement and program evaluation, this project was formally reviewed by institutional authorities at Women’s College Hospital (the Assessment Process for Quality Improvement Projects – APQIP) and has received Research Ethics Board approval.

Data collection

Data collection occurred between April and August of 2022. After the initial participant recruitment email by the primary investigator, all further communication regarding the interview took place between the research coordinator (VT) and the participants. To prevent power differentials and seek raw answers about the WCH pandemic program, VT conducted all interviews, as they were not involved in design or delivery of the program. Participants who expressed interest were re-informed about the study by VT and emailed a consent form to read prior to the interview. A data collection form was also sent out to participants to complete, which captured demographic characteristics and WCH vaccine program-related data about the shelters (# of shelters with primary care partner on-site, number of residents, resident capacity before and after COVID (though it is still on-going), # of staff before and after COVID, referral mechanism to WCH vaccine program, whether vaccine education sessions were provided by WCH or other organizations, and vaccine uptake % as of October 2021).This was collected separately from the interview sessions to allow shelter administrators time to access their internal documents to gather data. Verbal consent was acquired at the beginning of the interview session. The 45-min sessions, conducted by VT, took place via Zoom© and were audio-recorded, transcribed, and de-identified using pseudonyms. To facilitate these sessions, VT used semi-structured interview guides developed by the research team. This guide centred around three key areas of inquiry: (1) Vaccine program evaluation and lessons learned (e.g., What were barriers, facilitators, and lessons throughout the process? How were shelter staff and clients impacted?); (2) Perceptions on hospital/community partnership (e.g., What were overall perceptions of this partnership and strategy?); (3) Opportunities forward (e.g., How can this partnership between hospitals and shelters be sustained in the future to fulfill needs beyond COVID-19. By the time of the last interview, theoretical saturation was reached, as no new conceptual information emerged.

Data analysis

Aligned with the CGT data analysis method developed by Charmaz [ 23 ], this study approached data analysis through three stages: initial, focused, and theoretical. All data were imported into NVIVO 12 software for coding. VT and JR worked together to complete the first stage of analysis: initial coding. This is where line-by-line coding is performed, and information is gained inductively to create codes [ 23 ]. VT and JR individually worked through the 10 transcripts and tagged codes, which led to a creation of a joint codebook. VT and JR then came together to work on this codebook, discussing similarities and differences and potential conceptual groupings of the data. To clarify concepts and engage with the data in-depth, VT and JR made constant comparisons with questions such as “What is said, what do they mean, why is that said” [ 20 ]. This codebook was also shared with the research team (VT, JR, VW, SL) for feedback. After this, VT and JR coded three transcripts using the revised codebook to compare notes for meaningful coherence and interrater reliability. All transcripts were then coded using the codebook. Focused coding, the second phase of data analysis, consisted of VT and JR reviewing their codes and jointly identifying the emergence of analytically meaningful codes obtained from initial coding [ 19 ]. A meeting was held at this stage with the research team to debrief and discuss themes for further reflection and refinement. Lastly, VT, VW, and SL engaged in theoretical coding to further conceptualize the relationship between codes and partake in theory formation [ 23 ]. Memo notes were exchanged as a point of discussion about what stood out and what kept recurring to everyone as the core concept of the overall data analysis. This emerged as the core category “access to healthcare is a human right; understand our communities”. VT wrote the results, using assigned numbers for all participants.

Reflexivity and quality criteria

To promote ongoing reflexivity throughout this research process and maintaining high quality rigour, the research team adopted the universal guidelines for reflexive thematic analysis [ 24 ]. This guideline outlines twenty critical questions to encourage deliberate reflection and engagement, specifically during data collection and analysis. The second (SL) and last authors (VW) were involved in the WCH pandemic program as a physician and nurse practitioner working at WCH. They have built relationships with the shelter organizations and have an innate attachment to this program as they were involved at the outset, with a passionate drive to deliver this community-based program during the COVID-19 crisis. Conscious of this, the research team had raw, reflexive conversations throughout this project to capture the impacts of the two authors’ experiences and how their positionality in this work may influence this study’s data analysis. Informed by CGT and our understanding of researchers’ roles within projects, we utilized the support of continuous research team debriefing, memo writing, and reflexive dialogue to reflect on how our codes are influenced by our team’s knowledge, beliefs, and experiences [ 19 ]. These practices enhanced credibility, consistency, and resonance of our study’s findings with respect to the participants’ experiences and overall context [ 21 ].

Results & discussion

As described previously, a staff member from each shelter ( n  = 10) each filled out a data collection form, describing shelter demographic characteristics and the data related to the hospital vaccine program. Table 1 displays this compiled information, which is representative of data known at the time of interviews (April-August 2021).

Data analysis of the research findings revealed five main categories, 16 subcategories, and one core category. The core category is “access to healthcare is a human right; understand our communities”. The main categories are expanded COVID-19 response capacity, challenges identifying and managing outbreaks, barriers to the vaccine program, community-centred immediate shelter needs, and avenues for intersectoral relationship strengthening. Table 2 shows the categories, definitions, and subcategories of the hospital-community COVID-19 partnership model and strategy.

Core category: access to healthcare is a human right; understand our communities

The core category demonstrated the underlying perception that all shelter and congregate settings users experienced disproportionate effects of the COVID-19 pandemic. Shelter staff and administrators emphasized that access to healthcare is a consistent barrier for homeless populations, although it is a human right. The statement of the participant “Access to healthcare is a human right; understand our communities.” [P4] effectively captured the essence of all participants’ perspectives and therefore emerged as the core category of this study. Overall, participants explained that understanding the diverse communities and their needs is a requirement for care partners and for ensuring that hospitals work internally and externally to provide access to healthcare for all. With the pandemic, the barrier to accessing healthcare was exacerbated, but this hospital-based pandemic program helped alleviate some of its negative effects, as shown in the following categories below.

Main category: expanded COVID-19 response capacity

The Expanded COVID-19 Response Capacity category includes three subcategories: increased access to resources, increased health knowledge, and a go-to trusted, credible partner. In this category, participants assessed the hospital partner’s efficacy in supporting their shelter to successfully respond to the COVID-19 pandemic. Participants discussed the impact of the hospital partner’s support, in terms of what this hospital-community collaboration equipped them with, in order to respond to COVID-19. Ontario’s vaccination rollout, with an emphasis in Toronto, was slower than average, with confusing messaging and inconsistencies throughout various public health units [ 25 , 26 ]. Under such provincial public health complexities, this local hospital-community partnership allowed for an increased access to resources, such as administering vaccines to clients within the shelter and receiving vaccines more quickly.

Allowed us to offer our space for people to get and promote vaccines. Everyone (clients and staff) felt very confident and comfortable. There were doctors and nurses there to answer questions. It felt like they had all the support and information they needed. People would not have gone to get vaccines otherwise, unless we had physically accompanied each person [to an external location]. [P7]

We probably received vaccines quicker because of [the] partnership... A lot of the refugee homes aren’t city shelters; we’re independent NGOs that do this refugee home model; we’re not always on the city’s radar when it comes to public health initiatives. Ourhospital partner pushed to have vaccines delivered to refugee homes and it helped us getpeople vaccinated quicker. [P8]

The hospital-community partnership model between shelters and WCH also increased shelter staffs’ health knowledge, with respect to IPAC (Infection Prevention and Control) support and isolation policies.

“ X sent photos of other clinic set-ups to show how they can be adaptable to any space.” [P7].

“Helped with IPAC support. Some staff brought up stuff during staff meetings. Anything I couldn’t answer, I asked via a quick email to our hospital partner, and they did their best to help with those pieces.” [P9].

“Increased our ability to be informed about COVID-19, so we can inform others. We reach out anytime we have questions about isolation policies and stuff, seek advice from health professionals, so this support is helpful in that sense.” [P6].

During a time of confusion around infection prevention protocols and isolation practices, information originating from hospitals were seen as credible and trustworthy. Essentially, homeless shelters are considered housing facilities and resultingly, exist in a public health vacuum [ 4 ]. Despite not being included in IPAC standards, these shelters carry essential health functions that if not upheld would be detrimental to their inhabitants [ 4 ]. In many cases, shelters’ COVID-19 response capacity was strengthened by having a hospital partner as a first point of contact to answer shelters’ COVID-19-related information.

“Good to receive COVID-19 information from a hospital. I feel it was a more trusted source, especially at the beginning of pandemic.” [P8]

“Made it a lot easier to run our shelter and get up to fuller capacity, less fear. Appreciative of our connection and their support.”  [P5].

“Confidence in the vaccine because the hospital partner’s staff were well-educated and trustworthy people to the residents, so they were able to answer lots of questions. It promoted vaccine uptake for sure.”  [P7].

Main category: challenges identifying and managing outbreaks

During the COVID-19 pandemic, shelter staff highlighted outbreak identification and management as a primary component of this hospital-community partnership strategy. Outbreaks were anticipated in this situation, yet it was unclear how shelters were to navigate through them, despite the hospital-community partnership strategy. Outbreak identification and management consist of two subcategories: isolation challenges and movement of people in precarious circumstances. Participants cited limited infrastructure and wait times for test results as contributing factors to isolation challenges.

When we had the outbreak, it was really hard to contain it. It went on for a month –more and more people getting COVID. The set up that we have is such that it is hard to contain people for an extended period of time: for e.g., family of 4 sharing one hotel room. [P3].

The results at the hospital partner’s testing centre took very long. It was a challenge for a congregate setting, when we don’t know what to do when you don’t know results for a couple of days. We don't have isolation on site for clients that are symptomatic and waiting for results. We cannot refer families until we have a positive result. That's why so important to have test results very soon. [P10].

Shelters have difficulty controlling the movement of people in precarious circumstances. This was crucial to limiting the spread of COVID-19 but proved impossible for families and people who must continue to go in-person to work and school for their livelihoods.

One of the biggest challenges is, especially with pandemic, it’s very hard to control the movement of people (as a family shelter) - especially when school is open for example. Most of our clients are susceptible to getting infected with COVID-19 – managing this risk as a shelter is hard for us to control. We can’t control where and how people move around. [P3]

Main category: barriers to the vaccine program

The broad services offered by CRT over the course of the pandemic came with their own unique set of partnership challenges, particularly its shortcomings around vaccination and testing for the shelters’ clients. This category refers to the ways in which the program was inaccessible for the shelter population and certain groups therein. In addition to the frustrating testing wait times experienced by shelters, participants noted 4 main issues: inconsistent testing schedules offered onsite at the hospital, barriers to vaccine delivery, structural barriers for specific populations, and vaccine hesitancy. It should be highlighted here that these issues play out against a backdrop of ongoing systemic issues within the country’s healthcare environment. Though no individual hospital program may fix a structural issue, it is important to consider where special attention may be required when designing and carrying out such programs. For example, the hospital partner’s variability in testing schedules were disruptive for people in precarious circumstances and discouraged individuals’ participation.

Often, testing hours change [at the hospital], and we wouldn’t know until after we sent someone…. difficult and confusing, would have been great to know in advance. There were challenging situations sometimes… [the hospital testing site] also might not have a very open/positive response to receive families who come near the end of the day.” [P10].

With respect to vaccine delivery, many shelters had limited space and personnel and found it difficult to figure out the appropriate place to set up the vaccination site. When hospital partners arrived, participants said it created group gatherings, since many clients were curious with questions about COVID-19 and the vaccines. Shelter staff were needed to manage traffic flow in and out of the vaccination site, due to its inconvenient location in places like dining rooms. Some participants felt a pre-vaccine site visit would have helped alleviate this tension. All participants also felt this vaccine delivery process was unnecessarily administration-heavy on the shelters, who were expected to send paperwork with lists of client names for vaccination beforehand.

I would say the capacity and manpower to organize the vaccine clinics is hard. The hospital partner has been great to come on very short notice, but it’s difficult at times. That’s what kept me back from hosting and organizing more clinics.” [P1]

The administration part, in terms of having the names and health card numbers, was heavy and challenging. Working with the vulnerable homeless population, it’s hard to pinpoint who was exactly going to be there in a drop-in situation on a given day. There was paperwork, locked key, and it had to be done X hours before and sent to X number of people. [P2].

Contextualizing the shelter populations’ broader environmental concerns and recognizing the structural barriers individuals from specific populations face is critical to the overall success of hospital-community partnerships. Some unanticipated structural barriers for specific populations led to roadblocks and impeded shelter clients’ access to vaccination and care. Some affected groups were undocumented individuals, international students, out-of-province people – those without an Ontario Health Insurance Plan (OHIP) card.

People without an OHIP card were afraid they’ll get sick with the vaccine, and then [they] don’t have support/immediate healthcare, or long-term supports… People who don't have OHIP, they don’t have access to emergency rooms right now because the Ministry of Health is not providing free services. [P4].

Poor health care access is a long-standing fear for those who are undocumented or do not have OHIP as demonstrated in this comment above. It is important to recognize the depth of this commonly held belief in the context of COVID 19, where this understanding prevailed despite the Ontario government expanding health care entitlement to all people living in Ontario, Canada, with or without publicly funded health coverage on March 21, 2020, 10 days after COVID 19 was declared a global pandemic [ 27 ]. This perception speaks to the reality on the ground demonstrating practical access barriers; this may be an area where hospital partners could have made access issues clearer to their partners.

For clients with a history of trauma, participants hoped there could have been a more flexible approach to vaccination but understood the limitations within the current institutional structure that did not allow for this.

Having flexibility in care would be ideal in helping/supporting certain clients with trauma. It would have been nice to make settings as non-clinical as possible would’ve been great because of people’s past negative experiences with the healthcare system. If we could offer vaccines at people’s bedspaces, that would’ve been great. [P1].

Finally, vaccine hesitancy was the last subcategory of barriers to the vaccine program. Though the vaccine mandate motivated staff to get vaccinated, many clients were fearful and reluctant about getting the vaccine. Almost all participants agreed that the hospital partner’s vaccine education, specifically the 1-on-1 sit-downs with health professionals and webinars, supported increased vaccine uptake in their organizations. However, as of October 21 st , 2022, 1.5 years after vaccine rollout, only 4/10 shelters reported an organizational vaccine uptake higher than 90% (Table 1 ). In shelters or congregate settings, movement cannot be strictly managed; thus there is a higher risk of infection. Therefore, vaccine uptake is a key preventative measure in managing the spread of COVID-19. Participants described the significance of understanding the historical discrimination clients faced by the healthcare system, and associated distrust in Western medicine and medical authorities.

Like any other organization dealing with people from diverse groups, we are dealing with [a] lack of trust in vaccines, peoples’ experiences of medical discrimination, and so some clients are hesitant about getting vaccinated. It’s an ongoing, continuous discourse that all our partners must battle to minimize it. [P6].

We still need more education to combat vaccine hesitancy with our client groups, who are vulnerable and have complex medical issues. They’re afraid to take the vaccine… they’re transient, so they may say they’ll take the vaccine today, but they’re somewhere else tomorrow when the vaccines come. [P2].

Main category: community-centred immediate shelter needs

While speaking to participants about the efficacy of the vaccine program, several unaddressed, urgent shelter needs emerged. These community-centred exigencies were existing gaps that compounded shelters’ day-to-day pandemic requirements. Many shelters shared similar needs, which are categorized below into three main subcategories: continuing pandemic support, mental health services, and healthcare system navigation and access support. Continuing pandemic support, as requested by shelters, speaks to the unclear COVID-19 protocols since moving into fourth/fifth waves of the pandemic. Many participants spoke about looking for support in keeping up with changing protocols, at a time where pandemic fatigue is high and when there is still different information coming from different sources.

Lots of questions and not enough clarity around COVID restrictions and what similar organizations should be doing (especially since we are not a shelter but still fall under congregate care). It was really easy before with simple provincial guidelines… now, grey areas around keeping people healthy and safe. [The hospital partner] could continue to offer consultations for those who are making those decisions… serve as consultants to review policies and make suggestions on policies and/or guidelines. [P7].

“Priority testing would be great for all shelters and congregate settings.” [P10]

A challenge is continuing to screen residents regularly. We don’t have enough staff to screen people. It got better in the middle, but now it sort of got degraded again with the fatigue. With fluctuating numbers and changing rules with COVID, it’s hard to know what we should be doing with COVID. [P8].

The pandemic, through social isolation and widespread anxiety and depression, has detrimentally affected peoples’ mental health. Discussing the realities of how shelters serve many people with pre-existing mental health and addiction needs, participants called for mental health crisis support and intervention on-site to combat the increased number of crisis incidents during the pandemic. Many shelters specifically identified needing clinical intervention support, rather than counsellors.

We need mental health supports – not just case managers or counsellors, more like clinical counselling and psychotherapy. A lot of the time, people are connected to counsellors when asked, but our staff are already counsellors. It’s the clinical piece that’s missing. Medical students will be coming on-site monthly to see residents and address any medical concerns they may have, but mental health supports are still needed. [P9].

Many service care providers were forced to change their scope of functioning during the pandemic and shelters were no exception. However, this change wasn’t legitimized within the healthcare system. For instance, one participant recalled frustrating experiences during the pandemic, having to deal with individuals inappropriately discharged from hospitals to their shelter.

“We are a shelter, but it also feels like a gateway to the shelter system at times, even though it’s not supposed to be anymore. COVID changes who we are and what we do; throughout the system, that’s it isn’t recognized exactly, so we get a huge number of inappropriate drop-offs and discharges from hospitals. We have clients sent in a taxi at midnight from the hospital wearing a hospital gown and no shoes, showing up clearly not well… And we end up sending them back by taxi. Anything that could help in terms of that process of medical discharges to the shelter system would be good; that’s a big system ask we have. [P2].

Shelters also brought up the lack of information available around navigating the healthcare system and accessing supports, when it comes to both urgent and non-urgent care. This was underlined as key referral points hospitals, peer navigators, and healthcare professionals should share with local shelters in their geographic areas. The primary focus of many shelters lies in housing, and there is often little attention placed on health resourcing, solidifying partnerships, accountability and governance structures therein [ 4 ]. Recognizing this and working towards geographical alignment, with health partners, to meet these immediate shelter needs are essential to keeping communities’ needs at the centre of hospital-community partnerships.

Main category: avenues for intersectoral relationship strengthening

Lastly, the final main category brings up long-term, systems-level avenues where shelters, hospitals, and the general community can build stronger intersectoral relationships. Hospital-community partnerships require sustainable change, commitment, and lasting support to strengthen their relationships to serve communities holistically. Four pivotal avenues were shared by participants: health advocacy for individuals without OHIP, information-sharing tables, official partnerships, and educating health professionals about systemic health inequities. Health advocacy for individuals without OHIP arose as a top ‘ask’ for many shelters. This could be related to the fact that the hospital partner had a specific clinical program that provides comprehensive medical services to newly arrived refugee clients. With COVID-19, there has been an increase in waiting times for attaining an appointment at this clinic and many refugee claimants not having a family doctor to depend on. Prioritization of this issue illustrates the value that health is a human right, not a status-based right.

“Try to help us with encouragement and advocacy with different organizations, especially on behalf of people without OHIP.” [P4]

“Non-insured is always a challenge, and we have many women with no status in our shelter. We refer them to community health centres, but funding they have for this population always gets exhausted at the end of each year.” [P9].

Almost all shelters outlined the potential of information-sharing tables as a tool for intersectoral relationship strengthening. Shelters wanted hospital engagement on a quarterly basis to check-in, ask about evolving community needs, and share relevant information that could support communities’ health needs, including safe injection sites, monkeypox anxieties, etc. With respect to information-sharing between hospitals and community partners, one participant eloquently detailed the need to not individually visualize each community shelter organization as a siloed entity.

In addition to direct relationships, all of the refugee organizations have a really strong network and collaborate amongst us. When you think about collaboration between the hospital partner and our community, think more broadly than just individual organizations, think of us as a whole collective. A lot of the covid protocols and information that we got was collaborating amongst the various refugee houses. [P7].

The need for formalized partnerships also came up as an avenue for stronger intersectoral relationships. This demonstrates a level of commitment that communities can expect from hospitals and provide a means for accountability. Some participants brainstormed the idea of designating an official liaison role between shelter and hospital systems, instead of participants having to haphazardly reach out to health professionals they knew from previous collaborative work.

Connecting directly back to the core category of understanding communities that hospitals serve, this final avenue consists of educating health professionals about systemic health inequities. Many participants are shocked by the lack of awareness health providers have about their clients’ realities. Without the knowledge of the landscape in which the healthcare system works and the inequities it perpetuates, participants explain that health professionals are not equipped to adequately support shelter clients.

Helpful to have staff from the hospital partner who know this is a congregate setting and understand/be aware of challenges of the population they’re working with, to make sure they recognize the importance of situations & know limited access/availability to healthcare system for our clients. Perhaps then they could refer them accordingly or try ways to access other services even if not directly covered, or even collaborate to get more healthcare services. [P10].

It would be really amazing to have the support and all the hospitals to know what we are doing. We have had calls with social workers from hospitals who do not understand how we provide health care for people without OHIP. When doctors have the knowledge about lack of access to healthcare to people with OHIP, then doctors are more conscious/informed about how difficult it is for them. Knowledge is power. [P4].

This study is unique in showcasing community perspectives in an official hospital-community partnership program during COVID-19. This hospital-based pandemic program demonstrates the importance of centring community voices in hospital-based community programs, as well as the breadth of knowledge gained by service providers when doing so.

During the COVID-19 pandemic, it was found that hospital service areas across the United States with a greater number of community partnerships (schools, community-based organizations, local agencies) had reduced case-fatality rates than those with fewer partnerships [ 28 ]. Our study similarly demonstrates increased access to resources and response capacity, as the organizational vaccine uptake across the 14 shelters in the study ranged from 76–100%. There is literature that has examined and identified successful factors for responding to COVID-19 in shelter-hospital partnerships, including an increase in resources, such as rapid access to testing, as well as support with restructuring physical spaces in line with IPAC and isolation policies (the latter being what we refer to as health knowledge in our study) [ 29 ]. However, our study explicitly lists the shelter workers’ perception and value of hospitals as a go-to trusted, credible health partner as crucial to this partnership and program, especially at a time of chaos and confusion during the pandemic. This building of trust and respect within an existing or new hospital-community partnership is important to a successful model.

As shown in a study in England investigating COVID-19 among people experiencing homelessness, outbreaks in homeless and congregate settings can lead to a high attack rate among the population, even when incidence remains low in the general population [ 30 ]. This means avoiding deaths is dependent on preventing transmission within such settings. Aligned with this, our study found that there were challenges identifying and managing outbreaks, despite the partnership in place. There was limited infrastructure and space for individuals to isolate while waiting on their test results. A review article on the prevention and mitigation strategies of respiratory infectious disease outbreaks among people experiencing homelessness suggests that interventions centered on reducing homelessness through income interventions, targeting macroeconomic factors, and the provision of adequate housing [ 31 ]. Hospital-community partnerships can minimize poor health outcomes and encourage bridging across sectors to promote health for all, but it remains clear that they are unable to eradicate broader system-level concerns without necessary structural change.

Building on the topic of existing system-level concerns, our study also revealed barriers to the vaccine program in ways in which the program was inaccessible for the shelter population and certain groups therein. Although our study’s barriers focused on the absence of an OHIP card for undocumented individuals and international students, and its impediment on their access to vaccination and care, other studies have shown that this is not an Ontario or even Canada-specific problem. A study in Rome detailed bureaucratic and organizational obstacles as similar impediments and showcased alternative approaches to cost-effective models that can reduce existing structural barriers to access diagnostic and preventive services for the homeless and undocumented population [ 32 ]. Thus, when designing and carrying out such hospital-community partnered programs, there must also be considerations of how to pay special attention to such gaps and simultaneously lobby for change in these areas.

Recently, a Toronto COVID-19 study examining the perspectives of people experiencing homelessness, healthcare workers, and shelter workers who cared for them, revealed how COVID-19 exacerbated the existing healthcare barriers for populations experiencing homelessness, including reduced shelter capacity, public closures, and lack of isolation options [ 33 ]. Our findings build on this by outlining current community-centred shelter needs and future avenues for intersectoral relationship strengthening. These suggestions should be taken into consideration when planning future hospital-community programs, with the recognition that the perspectives of shelter populations may differ depending on demographic context and location. Our findings highlight that the current Ontario healthcare system has many gaps and shortcomings when it comes to serving populations who are homeless. At a time of high anxiety and many health unknowns, hospitals were viewed as a trusted source for information, and this partnership model certainly provided benefits to siloed shelters without many institutional supports. Though structural change is necessary, hospital-based community programs in collaboration with shelters, can alleviate some of the ongoing health concerns faced by shelter populations – during a time of COVID-19 or not. For example, mental health crisis support and intervention on-site is a major community-centred immediate shelter need to combat the increased number of crisis incidents during the pandemic. A UK qualitative study exploring access to mental health and substance use support among individuals experiencing homelessness during COVID-19 noted that individuals experienced many forms of exclusion that were exacerbated during the pandemic, coupled with heightened mental health needs during this time of adversity [ 34 ].

In preparation for future pandemics and unanticipated health emergencies, access to care and cohesion within the health system requires the continuous engagement in relationship-building between hospitals and communities to support co-creation of innovative models of care, to promote health for all. The primary focus of many shelters lies in housing, and there is often little attention placed on health resourcing, solidifying partnerships, accountability and governance structures therein [ 35 ]. Recognizing this and working towards geographical alignment, with health partners, to meet these immediate shelter needs are essential to keeping communities’ needs at the centre of hospital-community partnerships. Hospital-community partnerships require sustainable change, commitment, and lasting support to strengthen their relationships to serve communities holistically.

No different from other research, this study has limitations. This research was conducted a year after the hospital-community partnered vaccine program took place, which was longer than an ideal follow-up time for interviews to take place. Participants had trouble remembering certain events; some individuals who had taken notes in a journal were able to better describe scenarios and share experiences than others. Additionally, despite the interviewer not having been involved with the vaccine program itself, their affiliation with WCH may have prevented participants to not be completed honest about the shortcomings of the program/partnership, especially since future collaborations were not yet formally established. With regards to the shelter demographic characteristics and the hospital vaccine program-related data compiled from participants’ data collection forms, it would have been interesting to learn more about how these characteristics impacted participants’ experiences and perceptions of the vaccine program. For instance, it would be helpful to know how a shelter’s referral mechanism to the hospital vaccine program may have impacted their overall perceptions and how this vaccine program may have impacted the shelter differently, depending on whether they had a primary care partner onsite. In our sample, 10/14 shelters had a relationship with WCH prior to the pandemic and this is important in contextualizing the presented information. Lastly, as a constructivist grounded theory study, there are limitations on the generalizability of knowledge constructed beyond this social context. These findings should be viewed as part of a larger puzzle and can be used to generate points of inquiry for further research in the field. Sampling from other geographical locations might further enhance our understanding of the phenomena explored in this study.

Conclusions: policy and practice implications

In this study and through the process learnings of exploring the overall perceptions of shelter workers of a hospital-community partnership model, three key takeaways emerged for health(care) policy and practice:

‘Health as a human right’ framework is an organizing principle in shelters but not necessarily in hospitals. How can hospitals adopt and integrate this framework at the policy level for internal and external operations/practice for a more equity-based approach to care?

For hospitals, there are gaps in knowledge about community and shelter realities. Ongoing formal partnering between hospitals and communities, through information-sharing tables and regular check-ins, is one way to bridge this gap.

Empowering shelter staff is crucial to the success of hospital-partnered programs and clinical interventions. This occurs through bidirectional knowledge transfer. Shelter workers regard hospital staff as knowledge holders. Hospital staff/clinicians are asked to recognize shelter workers as knowledge holders so to build a foundation for information exchange and co-design of interventions.

We hope this hospital-community partnership strategy adds perspective and inspires action in hospital administrators, healthcare professionals, and policymakers to move forward in a way that serves your communities’ population health needs. Finally, this project calls attention to the urgent context-specific exploration needed to advance official hospital-community partnerships, where there is an everlasting commitment and accountability.

Availability of data and materials

The results/data/figures in this manuscript have not been published elsewhere, nor are they under consideration by another publisher. Anonymized datasets used and/or analyzed during the current study may be made available from the corresponding author on reasonable request.

Hwang SW, Chambers C, Chiu S, Katic M, Kiss A, Redelmeier DA, Levinson W. A comprehensive assessment of health care utilization among homeless adults under a system of universal health insurance. Am J Public Health. 2013;103(Suppl 2):E294–301. https://doi.org/10.2105/AJPH.2013.301369 .

Article   Google Scholar  

Martens WH. A review of physical and mental health in homeless persons. Public Health Rev. 2001;29(1):13–33.

CAS   PubMed   Google Scholar  

Homeless Hub. About Homelessness. n.d. https://www.homelesshub.ca/about-homelessness/homelessness-101/how-many-people-are-homeless-canada .

Baral S, Bond A, Boozary A, Bruketa E, Elmi N, Freiheit D, … Zhu A. Seeking shelter: homelessness and COVID-19. Facets. 2021;6:925–958. https://doi.org/10.14288/1.0400189 .

Perri M, Dosani N, Hwang SW. COVID-19 and people experiencing homelessness: challenges and mitigation strategies. CMAJ. 2020;192:E176-179. https://doi.org/10.1503/cmaj.200834 .

Article   CAS   Google Scholar  

Redditt V, Wright V, Rashid M, Male R, Bogoch I. Outbreak of SARS-CoV-2 infection at a large refugee shelter in Toronto, April 2020: a clinical and epidemiologic descriptive analysis. CMAJ Open. 2020;8(4):E819–24. https://doi.org/10.9778/cmajo.20200165 .

Article   PubMed   PubMed Central   Google Scholar  

Richard L, Booth R, Rayner J, Clemens KK, Forchuk C, Shariff SZ. Testing, infection and complication rates of COVID-19 among people with a recent history of homelessness in Ontario, Canada: a retrospective cohort study. CMAJ Open. 2021;9(1):E1-9. https://doi.org/10.9778/cmajo.20200287 .

Shariff SZ, Richard L, Hwang SW, Kwong JC, Forchuk C, Dosani N, Booth R. COVID-19 vaccine coverage and factors associated with vaccine uptake among 23 247 adults with a recent history of homelessness in Ontario, Canada: a population-based cohort study. Lancet Public Health. 2022;7(4):E366–77. https://doi.org/10.1016/S2468-2667(22)00037-8 .

Kiran T, Eissa A, Mangin D, Bayoumi I, Ivers N, Newberry S, ... Martin D. Brief on primary care part 1: the roles of primary care clinicians and practices in the first two years of the COVID-19 pandemic in Ontario. Sci Briefs Ontario COVID-19 Sci Advisory Table. 2022;3(67). https://doi.org/10.47326/ocsat.2022.03.67.1.0 .

Khandor E, Mason K, Chambers C, Rossiter K, Cowan L, Hwang SW. Access to primary health care among homeless adults in Toronto, Canada: results from the Street Health survey. Open Med. 2011;5(2):E94–103.

PubMed   PubMed Central   Google Scholar  

Inner City Health Associates. HHSF Map. n.d. https://www.icha-toronto.ca/shelter-health-services-map .

Duong D. Canadian physicians frustrated with vaccine rollout. CMAJ. 2021;193:E458–9. https://doi.org/10.1503/cmaj.1095929 .

Article   CAS   PubMed   PubMed Central   Google Scholar  

Kiran T. Why have family doctors been overlooked in vaccine rollout? Toronto Star; 2021. https://www.thestar.com/opinion/contributors/2021/03/05/why-have-family-doctors-been-overlooked-in-vaccine-rollout.html . Retrieved June 1, 2021.

Ontario College of Family Physicians. With vaccines coming, family doctors could jab millions more if fully involved; 2021. https://www.ontariofamilyphysicians.ca/news-features/family-medicine-news/~203-With-Vaccines-Coming-Family-Doctors-Could-Jab-Millions-More-If-Fully-Involved . Retrieved June 1, 2021.

Loutfy M, Kennedy VL, Riazi S, Lena S, Kazemi M, Bawden J, Wright V, Richardson J, Mills S, Belsito L, Mukerji G, Bhatia S, Gupta M, Barrett C, Martin D. Development and assessment of a hospital-led, community-partnering COVID-19 testing and prevention program for homeless and congregate living services in Toronto, Canada: a descriptive feasibility study. CMAJ Open. 2020;10(2):E483–90. https://doi.org/10.9778/cmajo.20210105 .

Hilts KE, Yeager VA, Gibson PJ, Halverson PK. Hospital partnerships for population health: a systematic review of literature. J Healthc Manag. 2021;66(3):170–98. https://doi.org/10.1097/JHM-D-20-00172 .

Fields J, Gutierrez JR, Marquez C, Rhoads K, Kushel M, Fernandez A, Chamie G, Rois-Fetchko F, Imbert E, Nagendra C, Pardo E, Andemeskle G, Rojas S, Jacobo J, Tulier-Laiwa V, LaSarre M, Green G, Shaw M, Ieglesias C, …Bibbins-Domingo, K. Community-academic partnerships to address COVID-19 inequities: lessons from the San Francisco Bay area. NJEM Catalyst. 2021. https://doi.org/10.1056/CAT.21.0135 .

Günbayi I, Sorm S. Social paradigms in guiding social research design: the functional, interpretive, radical humanist and radical structural paradigms. Online Submission. 2018;9(2):57–76.

Google Scholar  

Charmaz K. The power of constructivist grounded theory for critical inquiry. Qual Inq. 2017;23(1):34–45.

Gül U, Altuntaş D, Efe E. A year and a half later: clinical experiences of intern nursing students in the COVID-19 Pandemic: a constructivist grounded theory. Nurse Educ Pract. 2022;63:103381.

Charmaz K, Thornberg R. The pursuit of quality in grounded theory. Qual Res Psychol. 2021;18(3):305–27.

Rai N, Thapa B. A study on purposive sampling method in research. Kathmandu: Kathmandu School of Law; 2015.

Charmaz K. Constructing grounded theory: a practical guide through qualitative analysis. London: SAGE; 2006.

Braun V, Clarke V. Can I use TA? Should I use TA? Should I not use TA? Comparing reflexive thematic analysis and other pattern-based qualitative analytic approaches. Couns Psychother Res. 2021;21(1):37–47.

CrawleyM. Analysis | why other Ontario cities are ahead of Toronto in vaccinating against covid-19 | CBC news. CBCnews. 2021. Retrieved November 19, 2022, from https://www.cbc.ca/news/canada/toronto/ontario-vaccine-covid-19-vaccination-toronto-1.5933189 .

Jeffords S. Poor Communications undermine trust in Ontario’s vaccine plan: Experts | CBC News. CBCnews; 2021. Retrieved November 19, 2022, from https://www.cbc.ca/news/canada/toronto/poor-communication-ontario-vaccine-plan-1.5943214 .

Ontario Ministry of Health and Long-Term Care. Keeping Health Care Providers informed of payment, policy or program changes. Ontario Health Insurance Plan - OHIP bulletins; 2020. Retrieved September 30, 2022, from https://www.health.gov.on.ca/en/pro/programs/ohip/bulletins/ .

Park S, Hamadi HY, Nguyen AT, Tran V, Haley DR, Zhao M. Examining the relationship between hospital-community partnerships and COVID-19 case-fatality rates. Popul Health Manag. 2022;25(1):134–40.

Article   PubMed   Google Scholar  

O’Shea T, Bodkin C, Mokashi V, Beal K, Wiwcharuk J, Lennox R, ... & Chong S. Pandemic planning in homeless shelters: a pilot study of a Coronavirus Disease 2019 (COVID-19) testing and support program to mitigate the risk of COVID-19 Outbreaks in congregate settings. Clin Infect Dis. 2021;72(9):1639–1641.

Lewer D, Braithwaite I, Bullock M, Eyre MT, White PJ, Aldridge RW, ... & Hayward AC. COVID-19 among people experiencing homelessness in England: a modelling study. Lancet Respir Med. 2020;8(12):1181–1191.

Zhu A, Bruketa E, Svoboda T, Patel J, Elmi N, Richandi GEK, ... & Orkin AM. Respiratory infectious disease outbreaks among people experiencing homelessness: a systematic review of prevention and mitigation strategies. Ann Epidemiol. 2023;77:127–135.

Morrone A, Buonomini AR, Sannella A, Pimpinelli F, Rotulo A. Unequal access to testing and vaccination services for the homeless and undocumented population during COVID-19 pandemic. Int J Public Health. 2022;104:1604851.

Hodwitz K, Parsons J, Juando-Prats C, Rosenthal E, Craig-Neil A, Hwang SW, ... Kiran T. Challenges faced by people experiencing homelessness and their providers during the COVID-19 pandemic: a qualitative study. Can Med Assoc Open Access J. 2022;10(3):E685-E691.

Adams EA, Parker J, Jablonski T, Kennedy J, Tasker F, Hunter D, ... Ramsay SE. A qualitative study exploring access to mental health and substance use support among individuals experiencing homelessness during COVID-19. Int J Environ Res Public Health. 2022;19(6):3459.

Beharie N, Leonard NR, Gwadz M. “No brokers to move out of here”: a mixed method analysis of the impact of homelessness policy and shelter governance on families residing in NYC shelters. J Soc Distress Homeless. 2021;30(2):141–54.

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Acknowledgements

The authors thank the shelter workers, physicians, nurses, and healthcare providers who led pandemic efforts, including leaders at Women’s College Hospital and community shelters for coming together for the initiatives by the COVID-19 Community Response Team (CRT). Finally, the authors thank the participants who shared their time and experiences with the research team.

Financial disclosure statement

This project has received funding for this work from The Foundation at Women’s College hospital.

This study was supported by a grant from the The Foundation at Women’s College Hospital. The study sponsor had no role in study design, data collection, analysis, interpretation of data, manuscript preparation or the decision to submit for publication.

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Vivetha Thambinathan, Suvendrini Lena, Jordan Ramnarine, Helen Chuang, Marc Dagher, Elaine Goulbourne, Sheila Wijayasinghe, Jessica Bawden, Logan Kennedy & Vanessa Wright

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Contributions

V.W. & S.L. conceived and designed the study. V.T. led data collection and analysis. V.T. theoretically conceptualized the manuscript and wrote the methods, results, and discussion sections. V.T. prepared Table 1 . S.L. wrote the implications section. J.R. and V.W. co-wrote the introduction. V.T. conducted the interviews and V.T. & J.R. co-analyzed the data. V.T., S.L., and V.W. revised the manuscript. V.T., S.L., V.W., J.R., H.C., L.O., M.D., E.G., S.W., J.B. & L.K. gave final approval of the version to be published and agreed to be accountable for all aspects of the work.

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Thambinathan, V., Lena, S., Ramnarine, J. et al. “Access to healthcare is a human right”: a constructivist study exploring the impact and potential of a hospital-community partnered COVID-19 community response team for Toronto homeless services and congregate living settings. BMC Health Serv Res 24 , 526 (2024). https://doi.org/10.1186/s12913-023-10140-3

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• Community health
• Hospital-community partnership
• Homeless services
• Integrated healthcare
• Constructivist study

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NCBI Bookshelf. A service of the National Library of Medicine, National Institutes of Health.

Hughes RG, editor. Patient Safety and Quality: An Evidence-Based Handbook for Nurses. Rockville (MD): Agency for Healthcare Research and Quality (US); 2008 Apr.

Patient Safety and Quality: An Evidence-Based Handbook for Nurses.

Chapter 8 health services research: scope and significance.

Donald M. Steinwachs ; Ronda G. Hughes .

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The provision of high-quality, affordable, health care services is an increasingly difficult challenge. Due to the complexities of health care services and systems, investigating and interpreting the use, costs, quality, accessibility, delivery, organization, financing, and outcomes of health care services is key to informing government officials, insurers, providers, consumers, and others making decisions about health-related issues. Health services researchers examine the access to care, health care costs and processes, and the outcomes of health services for individuals and populations.

The field of health services research (HSR) is relied on by decisionmakers and the public to be the primary source of information on how well health systems in the United States and other countries are meeting this challenge. The “goal of HSR is to provide information that will eventually lead to improvements in the health of the citizenry.” 1 Drawing on theories, knowledge, and methods from a range of disciplines, 2 HSR is a multidisciplinary field that moves beyond basic and applied research, drawing on all the health professions and on many academic disciplines, including biostatistics, epidemiology, health economics, medicine, nursing, operations research, psychology, and sociology. 3

In 1979, the Institute of Medicine defined HSR as “inquiry to produce knowledge about the structure, processes, or effects of personal health services” 4 (p. 14). This was expanded upon in 2002 by AcademyHealth, the professional organization of the HSR field, with the following definition, which broadly describes the scope of HSR:

Health services research is the multidisciplinary field of scientific investigation that studies how social factors, financing systems, organizational structures and processes, health technologies, and personal behaviors affect access to health care, the quality and cost of health care, and ultimately our health and well-being. Its research domains are individuals, families, organizations, institutions, communities, and populations. 5

More specifically, HSR informs and evaluates innovations in health policy. These include changes in Medicare and Medicaid coverage, disparities in access and utilization of care, innovations in private health insurance (e.g., consumer-directed health plans), and trends among those without health insurance. 6–10 The health care industry continues to change, and HSR examines the impact of organizational changes on access to care, quality, and efficiency (e.g., growth in for-profit hospital systems). As new diagnostic and treatment technologies are introduced, HSR examines their impact on patient outcomes of care and health care costs.

The definition of HSR also highlights the importance of examining the contribution of services to the health of individuals and broader populations. HSR applied at the population level is particularly important in understanding health system performance and the impact of health policy on the public’s health. In the United States, the National Healthcare Quality Report, 11 National Healthcare Disparities Report, 12 and Healthy People Year 2010 13 exemplify our capacity for monitoring quality and assessing change. These reports tell us that the American quality of care is inconsistent and could be substantially improved. The associated cost of health care services is monitored by the Centers for Medicare & Medicaid Services (CMS). CMS reports tell us that American health care is the most expensive in the world, consuming approximately 16 percent of America’s gross domestic product. 14

Beyond health policy, HSR examines the process of care and the interactions of patients and providers. For example, HSR methods have been developed to describe doctor-patient communication patterns and examine their impact on patient adherence, satisfaction, and outcomes of care. 15–17

Advances in HSR measurement methodologies have made possible policy innovations. Prospective payment of hospitals, nursing homes, and home health care by Medicare became possible with the development of robust case-mix measurement systems. 18 CMS was able to initiate a pay-for-performance demonstration, rewarding hospitals with better quality performance, using valid and robust measures of quality. 14 Innovations in health care policy are frequently made possible by advances in measurement of indicators of health system performance.

• History of Health Services Research

The history of HSR is generally considered to have begun in the 1950s and 1960s with the first funding of grants for health services research focused on the impact of hospital organizations. 19 , 20 On the contrary, HSR began with Florence Nightingale when she collected and analyzed data as the basis for improving the quality of patient care and outcomes. 21 Also significant in the history of HSR was the concern raised about the distribution, quality, and cost of care in the late 1920s that led to one of the first U.S. efforts to examine the need for medical services and their costs, undertaken in 1927 by the Committee on the Costs of Medical Care. 22 The committee published a series of 28 reports and recommendations that have had a significant impact on how medical care is organized and delivered in the United States. 23 Other key reports of historical importance to HSR were, for example, the national health survey in 1935–1936 by the Public Health Service, the inventory of the nation’s hospitals by the American Hospital Association’s Commission on Hospital Care in 1944, and studies by the American Hospital Association’s Commission on Chronic Illness on the prevalence and prevention of chronic illness in the community. 23

In 1968, the National Center for Health Services Research and Development was established as part of the U.S. Public Health Services to address concerns with access to health services, quality of care, and costs. The Center funded demonstration projects to measure quality and investigator-initiated research grants. In 1989, Congress created the Agency for Health Care Policy and Research and broadened its mission to focus attention on variations in medical practice, patient outcomes of care, and the dissemination of evidence-based guidelines for the treatment of common disorders. Later Congress reauthorized and renamed the agency, Agency for Healthcare Research and Quality (AHRQ). AHRQ provides Federal leadership for the field, investing in methods for quality measurement, development of patient safety methods, and health information technology (e.g., electronic health records and decision support systems).

The Federal role in HSR has expanded over time, and investments in HSR are made by multiple Federal agencies. In addition to AHRQ, the U.S. Department of Veterans Affairs, Centers for Disease Control and Prevention, the National Institutes of Health, CMS, and other Federal agencies fund HSR. The diversification of funding comes, in part, from the recognition that HSR is important in managing health care systems, such as the Veterans Health Administration, and provides essential information on the translation of scientific discoveries into clinical practice in American communities, such as those funded by National Institutes of Health. It is estimated that total Federal funding of HSR was $1.5 billion in 2003, of which AHRQ was responsible for approximately 20 percent. 24

Private funding of HSR has also grown over time. Funding by private foundations has a significant role and complements Federal funding. Among the many foundations funding HSR are the Robert Wood Johnson Foundation, Commonwealth Fund, Kaiser Family Foundation, Kellogg Foundation, and Hartford Foundation. Other private funding sources include the health care industry, for example, pharmaceutical companies, health insurers, and health care systems.

• Goals for Health Services and Patient Outcomes

The goal of health services is to protect and improve the health of individuals and populations. In a landmark 2001 report, Crossing the Quality Chasm: A New Health System for the 21 st Century, 25 the Institute of Medicine (IOM) of the National Academy of Sciences proposed that the goals for health services should include six critical elements:

• Patient Safety: Patients should not be harmed by health care services that are intended to help them. The IOM report, To Err Is Human , 26 found that between 46,000 and 98,000 Americans were dying in hospitals each year due to medical errors. Subsequent research has found medical errors common across all health care settings. The problem is not due to the lack of dedication to quality care by health professionals, but due to the lack of systems that prevent errors from occurring and/or prevent medical errors from reaching the patient.
• Effectiveness: Effective care is based on scientific evidence that treatment will increase the likelihood of desired health outcomes. Evidence comes from laboratory experiments, clinical research (usually randomized controlled trials), epidemiological studies, and outcomes research. The availability and strength of evidence varies by disorder and treatment.
• Timeliness: Seeking and receiving health care is frequently associated with delays in obtaining an appointment and waiting in emergency rooms and doctors’ offices. Failure to provide timely care can deny people critically needed services or allow health conditions to progress and outcomes to worsen. Health care needs to be organized to meet the needs of patients in a timely manner.
• Patient Centered: Patient-centered care recognizes that listening to the patient’s needs, values, and preferences is essential to providing high-quality care. Health care services should be personalized for each patient, care should be coordinated, family and friends on whom the patient relies should be involved, and care should provide physical comfort and emotional support.
• Efficiency: The U.S. health care system is the most expensive in the world, yet there is consistent evidence that the United States does not produce the best health outcomes 27–30 or the highest levels of satisfaction. 31 The goal is to continually identify waste and inefficiency in the provision of health care services and eliminate them.
• Equity: The health care system should benefit all people. The evidence is strong and convincing that the current system fails to accomplish this goal. The IOM report, Unequal Treatment , 32 documented pervasive differences in the care received by racial and ethnic minorities. The findings were that racial and ethnic minorities are receiving poorer quality of care than the majority population, even after accounting for differences in access to health services.

Crossing the Quality Chasm concludes that for the American health care system to attain these goals, transformational changes are needed. 25 The field of HSR provides the measurement tools by which progress toward these goals is assessed, as seen in the National Healthcare Quality Report. 11 Equally important, health services researchers are developing and evaluating innovative approaches to improve quality of care, involving innovations in organization, financing, use of technology, and roles of health professionals.

• Evaluating the Quality of Health Care

HSR evaluation of quality of care has proven to be an inexact science and complex, even though its definition is relatively simple: “Quality of care is the degree to which health services for individuals and populations increase the likelihood of desired health outcomes and are consistent with current professional knowledge.” 1 This definition draws attention to the importance of the application of current professional knowledge in the diagnostic and treatment processes of health care. The goal of quality care is to increase the likelihood of achieving desired health outcomes, as expressed by the patient.

The complexity in measuring quality comes from gaps in our knowledge regarding which services, for which patients, will actually improve the likelihood of desired health outcomes. Also, patients need not have the same desired health outcomes and therefore might not receive the same care for an identical health problem, further complicating the measurement of quality of care. Quality measurement has advanced substantially, but it remains early in its development.

The conceptual framework widely applied in evaluating quality comes from years of research and the insightful analysis of Avedis Donabedian. 33 He formalized the conceptual model for describing, analyzing, and evaluating the quality of care using three dimensions: (1) structure, (2) process, and (3) outcome. This model is applied in the evaluation of health services and the accreditation of health care providers and organizations.

Seminal research about variation in the quality of care patients received brought to focus the need to monitor and improve the quality of health care. Wennberg and Gittelsohn 34 , 35 found wide variation in practice patterns among community physicians, surgical procedures, and hospitals. Brook and colleagues 36 found that a small number of physicians were responsible for a large number of improperly administered injections. This was the precursor to research on the appropriateness of procedures and services under specific circumstances 36 , 37 as well as the development of practice guidelines and standards for quality care. 38 Yet the challenge of research on variations in care is the implication of the inappropriateness of care. The challenge is determining whether there is a direct relationship between rates of utilization, variations in appropriateness, and quality of care.

One of the challenges in understanding quality, how to measure it, and how to improve it is the influence of physical, socioeconomic, and work environments. Income, race, and gender—as well as individuals within society and organizations—influence health and risks to health. 40 Researchers have found that differences in internal factors, such as collaborative relationships with physicians, decentralized clinical decisionmaking, and positive administrative support, impact nurse and patient outcomes 41 , 42 and the quality and safety of care. 43 Differences in external factors, such as insurance and geographic location, can influence access to available health care professionals and resources, what type of care is afforded patients, and the impact of care on patients. The structure, process, and outcome dimensions of quality are influenced by both internal and external factors.

Structure of Health Care

The structure of health care broadly includes the facilities (e.g., hospitals and clinics), personnel (e.g., number of nurses and physicians), and technology that create the capacity to provide health services. Structural characteristics are expected to influence the quality of health care services. One component in the accreditation of health care facilities (e.g., hospitals, nursing homes) is the review of the adequacy of structural characteristics, including staffing, on-call resources, technology, and support services (laboratory, pharmacy, radiology). The structural resources of health care facilities and organizations are the foundation upon which quality health care services are provided.

Process of Care

The interactions between the health care providers and patients over time comprise the process of health care. The process of care may be examined from multiple perspectives: the sequence of services received over time, the relationship of health services to a specific patient complaint or diagnosis, and the numbers and types of services received over time or for a specific health problem. Examining the time sequence of health care services provides insights into the timeliness of care, organizational responsiveness, and efficiency. Linking services to a specific patient complaint or diagnosis provides insights into the natural history of problem presentation and the subsequent processes of care, including diagnosis, treatment, management, and recovery. Examining the natural history of a presenting health complaint across patients will reveal variations in patterns of care. For example, presenting complaints for some patients never resolve into a specific diagnosis. An initial diagnosis may change as more information is obtained. Patients may suffer complications in the treatment process. Also, the process of care may provide insights into outcomes of care (e.g., return visit for complications). Generally it is not possible to examine the process of care and determine how fully the patient has recovered prior health status by the end of the episode of treatment. For this reason, special investigations are needed to assess outcomes of care.

Evaluation of the process of care can be done by applying the six goals for health care quality. 25 Was the patient’s safety protected (i.e., were there adverse events due to medical errors or errors of omission)? Was care timely and not delayed or denied? Were the diagnosis and treatments provided consistent with scientific evidence and best professional practice? Was the care patient centered? Were services provided efficiently? Was the care provided equitable? Answers to these questions can help us understand if the process of care needs improvement and where quality improvement efforts should be directed.

Outcomes of Care

The value of health care services lies in their capacity to improve health outcomes for individuals and populations. Health outcomes are broadly conceptualized to include clinical measures of disease progression, patient-reported health status or functional status, satisfaction with health status or quality of life, satisfaction with services, and the costs of health services. Historically, quality assessment has emphasized clinical outcomes, for example, disease-specific measures. However, disease-specific measures may not tell us much about how well the patient is able to function and whether or not desired health outcomes have been achieved. To understand the patients’ outcomes, it is necessary to ask patients about their outcomes, including health status, quality of life, and satisfaction with services. HSR has developed valid and robust standardized questionnaires to obtain patient-reported information on these dimensions of health outcomes. As these are more widely applied, we are learning about the extent to which health care services are improving health.

Public Health Perspective on Health Services

Another perspective on health care services comes from the field of public health in which preventive health services are conceptualized at three levels: primary, secondary, and tertiary prevention. 44 Primary prevention includes immunizations, healthy lifestyles, and working and living in risk-free environments. Primary prevention seeks to prevent disease or delay its onset. Examples of primary prevention include immunizations against infectious disease; smoking prevention or cessation; and promotion of regular exercise, weight control, and a balanced diet. Secondary prevention includes the range of interventions that can reduce the impact of disease morbidity once it occurs and slow its progression. With the increasing burden of chronic diseases, much of the health care provided is directed at secondary prevention. Tertiary prevention is directed at rehabilitation for disabilities resulting from disease and injury. The goal of tertiary prevention is to return individuals to the highest state of functioning (physical, mental, and social) possible. The public health framework expands the structure, process, and outcome conceptual model by identifying the role and value of health services at three stages: prior to onset of disease, disease management, and disease recovery and rehabilitation.

• Methodologies and Data Sources Used in Health Services Research

The interdisciplinary character of HSR draws on methods and data sources common to the many disciplines that form the intellectual underpinnings of the field. This section discusses the measurement of effectiveness and efficacy of health services and some of the methods and data sources used to understand effectiveness. Effectiveness is one of the six goals of health services. Effectiveness is interrelated with the other five goals, and some of these interrelationships are discussed.

Efficacy and Effectiveness

An important distinction is made between efficacy and effectiveness of health services. Efficacy is generally established using randomized controlled trial (RCT) methods to test whether or not clinical interventions make a difference in clinical outcomes. A good example is the series of studies required for Food and Drug Administration approval of a new drug before it is certified as safe and efficacious and allowed to be used in the United States. Efficacy research is generally done with highly select groups of patients where the impact of the drug can be validly measured and results are not confounded by the presence of comorbid conditions and their treatments. The efficacy question is: What impact does a clinical intervention have under ideal conditions?

In contrast, effectiveness research is undertaken in community settings and generally includes the full range of individuals who would be prescribed the clinical intervention. Many of these individuals will have multiple health problems and be taking multiple medications, unlike those who were recruited to the RCT. Effectiveness research is seeking to answer the question: Who will benefit from the clinical intervention among all those people in the community who have a specific health problem(s)?

Both efficacy and effectiveness questions are important. Logically, effectiveness research would be conducted after finding the clinical intervention to be efficacious. However, there are many treatments for which no efficacy information exists; the treatments are accepted as common practice, and it would not be ethical to withhold treatments from a control group in an RCT. As a result, effectiveness research may not have the benefit of efficacy findings.

The routine use of an RCT to evaluate efficacy began in the 1960s and is the accepted procedure for evaluating new medications. However, this standard is not applied across all health care services and treatments. Most surgical procedures are not evaluated using an RCT. Intensive care units have never been evaluated using an RCT, nor are nurse staffing decisions in hospitals or the evaluation of many medical devices. We currently accept different standards of evidence depending on the treatment technology. As a result, the level of evidence guiding clinical and public health decisionmaking varies.

Methods for Effectiveness Research

A variety of methods are used to examine effectiveness of health services. RCT methods are not usually applied in effectiveness research because the intervention being studied has demonstrated efficacy or is acknowledged as accepted clinical practice. When this is true, it would be unethical to randomly assign individuals who would be expected to benefit from the intervention to a control group not receiving an efficacious treatment. We will discuss when RCT methods can be used to test effectiveness and provide several examples. More commonly, effectiveness research uses statistical methods for comparing treatments across nonequivalent groups.

RCT and Policy Research

RCT study methods can be used to compare the effectiveness and costs of services across randomly assigned representative population groups. In an RCT, study participants are randomly assigned to two or more groups to ensure comparability and avoid any selection bias. At least one group receives an intervention (clinical, organizational, and/or financial), and usually one group serves as a control group, receiving a current standard of care, sometimes referred to as “usual care.” Two examples of effectiveness research using an RCT methodology to answer policy questions are described.

Health insurance experiment

Probably the first application of RCT methods in effectiveness research was undertaken in the 1970s as a health insurance experiment. The experiment was designed to test the impact on cost and health outcomes of different levels of insurance deductibles and copayment rates. A total of 3,958 people, ages 14–61, were randomized to a set of insurance plans and followed over 3 to 5 years. 45

The economic impact of receiving free care in one plan versus being in a plan requiring payment out-of-pocket of deductibles and co-insurance had the expected impact on utilization. Those paying a share of their medical bills utilized approximately one-third fewer doctor visits and were hospitalized one-third less frequently.

The impact on 10 health measures of free health insurance versus paying a portion of medical care costs out of pocket was evaluated. The findings were that there was largely no effect on health as measured by physical functioning, role functioning, mental health, social contacts, health perceptions, smoking, weight, serum cholesterol, diastolic blood pressure, vision, and risk of dying. 46 The exceptions were that individuals with poor vision improved under free care, as did low-income persons with high blood pressure.

Medicare preventive services experiment

A more recent example of RCT methods applied in HSR is the Baltimore Medicare Preventive Services Demonstration. The study evaluated the impact on cost and outcomes of offering a defined preventive services package to Medicare beneficiaries. This was compared to usual Medicare coverage, which paid for few preventive services. The preventive services coverage being evaluated included an annual preventive visit with screening tests and health counseling. The physician could request a preventive followup visit during the year, which would also be covered. Medicare beneficiaries (n = 4,195) were randomized to preventive services (the intervention group) or usual care (the control group). Sixty-three percent of those in the intervention group had at least one preventive visit. Significant differences were found in health outcomes between intervention and control groups. Among the 45 percent with declining health status, as measured by the Quality of Well-Being scale, 47 the decline was significantly less in the group offered preventive services. Mortality was also significantly lower in the intervention group. There was no significant impact of preventive services on utilization and cost. 48

Comparative Clinical Effectiveness and RCTs

The passage of the Medicare Prescription Drug, Improvement, and Modernization Act of 2003 (MMA) included provisions for the funding of comparative effectiveness studies. AHRQs’ Effective Health Care Program (authorized under MMA Section 1013) informs comparative clinical effectiveness efforts by conducting and supporting research and evidence syntheses on priority topics to CMS.

Comparative effectiveness studies ask the question: Which of the alternative treatments available is best and for whom? Interest in this question reflects how advances in science have provided multiple treatment options for many conditions. Currently, there is no systematic process by which treatment options are compared and matched to the needs of different types of patients. Frequently, patients are started on one treatment and then may be prescribed alternative treatments if they cannot tolerate the treatment or if it is not as effective as expected. RCT methods can be used to evaluate comparative effectiveness of an intervention in treatment and control populations. This is ethical to do when there is no evidence that the treatments are not equivalent.

An example of a comparative effectiveness study using RCT methods is the CATIE study, testing alternative antipsychotic medications in the treatment of schizophrenia. A study of 1,493 persons with schizophrenia compared five of the newer antipsychotic medications (second generation) and also compared them against one of the first-generation antipsychotic medications. 49 , 50 The findings were surprising to many. The second-generation antipsychotics were no more effective in controlling psychotic symptoms than the first-generation drug. There was one exception, the drug Clozapine. 51 Furthermore, second-generation medications showed significant side effects that can affect health outcomes. These included weight gain, metabolic changes, extrapyramidal symptoms, and sedation effects. Each medication showed a somewhat different side-effect risk profile. From a positive perspective, the findings indicated that the clinician and patient can choose any of these medications as first-line treatment except Clozapine, which is generally used for treatment-resistant cases due to more intensive clinical monitoring requirements. The ultimate choice of treatment will depend on the patient’s ability to tolerate side effects that vary by drug.

The conduct of any RCT is resource intensive, requiring the recruitment of participants, and participants must give informed consent to be randomized. The rationale for making this investment may depend on the importance of the policy or practice issue. As shown, RCT methods can be applied to address policy and clinical care concerns with effectiveness. To the extent that the RCT includes a broad cross-section of people who would be affected by a policy or receive a clinical treatment, this methodology provides robust effectiveness findings.

Comparing Effectiveness and Costs Across Nonequivalent Groups

A range of statistical methods can be used to compare nonequivalent groups (i.e., groups receiving different treatments or exposures when there has been no random assignment to ensure comparability of group membership). It is not practical to review all the specific statistical approaches that can be applied. In general, the statistical methods seek to adjust for nonequivalent characteristics between groups that are expected to influence the outcome of interest (i.e., make the comparisons fair). Statistical adjustment for nonequivalent characteristics is referred to as “risk adjustment.” The foundations for risk adjustment come from multiple disciplines. Epidemiologic methods are routinely used to identify and estimate disease and outcomes risk factors. These methods are applicable in comparative effectiveness evaluations. 52

Operations research uses methods for creating homogeneous groups predictive of cost or disease outcomes. These methods are used to make fair comparisons across provider practices and health plans and to control the cost of health care. They also have been used in designing payment systems, including diagnostically related groups used in Medicare’s Prospective Payment System to reimburse hospitals for care rendered to Medicare beneficiaries, and resource-based relative value scales used in Medicare’s physician payment system. Diagnostically related groups are used to standardize and rationalize patient care in hospitals—provided largely by nurses and other health professionals—and resource-based relative value scales are used to standardize and rationalize patient care in outpatient settings—care provided largely by physicians and nurse practitioners. Other disciplines also contribute to our understanding of risk factors for the range of health outcomes, including mortality, health and functional status, quality of life, and rehabilitation and return to work

The basic form of a nonequivalent group comparison includes adjusting the outcomes of each group for the risk factors that are known to affect the occurrence and/or severity of the outcomes being evaluated. 53 For many disease outcomes, risk factors include demographic characteristics (age, gender), disease-specific risk factors (e.g., health behaviors, environmental exposures, and clinical indicators of risk), and indicators of health status (e.g., presence of comorbid conditions). After adjustment for risks factors, variations in access to care and quality of care (e.g., choice of treatment and adherence to treatment) would be expected to explain the remaining observed variation in outcomes. Ideally, the nonequivalent group comparison makes it possible to compare the effectiveness of alternative treatments and assess the impact of poor access to care. One limitation of this methodology is the limit of current knowledge regarding all relevant disease risk factors. Even when risk factors are known, limits on data availability and accuracy of risk factor measurement have to be considered.

Risk adjustment methods are also used to make cost comparisons across health care providers to determine which providers are more efficient. Instead of adjusting for disease risk factors, adjustments are made for the costliness of the patient mix (case mix) and differences in costs of labor, space, and services in the local area. Comparisons may be made to assess efficiency of providing specific services (e.g., hospitalization, office visit, or laboratory test). These comparisons would use case-mix measures that adjust for the costliness of different mixes of hospital episodes. 18 Comparisons of the total cost of care for insured populations would apply case-mix measures that adjust for disease and health factors that affect total cost of care. 54

Data Sources for Effectiveness Research

A range of data sources is used in effectiveness research, including administrative and billing data, chart reviews and electronic health records, and survey questionnaires. The following discussion identifies major attributes of each category of data source.

Medical records

Medical records document the patient’s presenting problem or condition, tests and physical exam findings, treatment, and followup care. The medical record is generally the most complete source of clinical information on the patient’s care. However, medical records are generally not structured to ensure the physician or other provider records all relevant information. The completeness of medical record information can vary considerably. If the patient does not return for followup care, the medical record may provide no information on outcomes of care. If a patient sees multiple providers during the course of treatment, each with its own separate medical record, complete information on treatment requires access to all the records. Lack of standardization of medical records also can make abstracting records for research very resource intensive.

Administrative and billing data

Health care providers generally have administrative and billing data systems that capture a limited and consistent set of data on every patient and service provided. These systems uniquely identify the patient and link information on insurance coverage and billing. Each service received by the patient is linked to the patient using a unique patient identifier. Services are identified using accepted codes (e.g., ICD9-CM, CPT), together with date of service, provider identifier, and other relevant information for billing or management reporting. Administrative data make it possible to identify all individual patients seen by a provider and produce a profile of all services received by each patient over any defined time period. Administrative data are comprehensive and the data are generally complete (i.e., no problems with missing data). The primary limitation is the data set collected by administrative systems is very limited and lacks the detail of the medical record.

Administrative data systems can provide some insights into quality and outcomes of care. AHRQ has developed software that provides quality indicators and patient safety measures using one administrative data set, hospital discharge abstracts. 55 , 56 Utilization-based indicators of outcome include rehospitalization, return to surgery during a hospitalization, and incidence of complications; some systems include information on death. Administrative data can efficiently provide quality and outcomes indicators for defined populations and for health systems. Other applications of administrative data include assessing efficiency, timeliness, and equity. The limitation is that there are many health conditions and health outcomes that cannot currently be measured using administrative data.

Survey questionnaires

Neither the medical record nor the administrative data capture information on the patient’s experience in health or patient-reported outcomes of care. Survey questionnaires are routinely used to obtain information on patient satisfaction in health plans. A widely used example is the Consumer Assessment of Healthcare Providers and Systems or CAHPS. 57

Information on the impact of health conditions on health and functional status has to come from the patient. This may be obtained at the time of a visit or hospitalization. However, to assess patient outcomes of care, systematic followup of patients after the completion of treatment is generally required. This can be done using mail questionnaires, telephone interviews, or in-person interviews. The HSR field has developed health-status and quality-of-life measures that can be used no matter what health conditions the patient has. 47 , 58–60 Numerous condition-specific measures of outcome are also used. 53

Effectiveness research relies on a range of data sources. Some are routinely collected in the process of medical care and patient billing. Others may require special data collection, including medical record abstracts to obtain detailed clinical data and survey questionnaires to gain information on the patient’s perspective on treatment and outcomes. Efficient strategies for examining effectiveness may use administrative data to examine a limited set of data on all patients, and a statistically representative sample of patients for in-depth analysis using data from chart abstracts and survey questionnaires.

Using HSR Methods To Improve Clinical Practice

HSR research tools can be applied in clinical settings to improve clinical practice and patient outcomes. These tools are used as part of quality improvement programs in hospitals, clinics, and health plans. Two examples illustrate applications to improve quality-of-care performance.

Evidence-based treatment

For many chronic medical conditions, clinical research has evaluated the efficacy of diagnostic methods and treatment interventions. As a result, evidence-based reviews of research literature can provide a basis for establishing quality-of-care criteria against which to judge current practice. In a national study of quality of medical care, it was found that only 55 percent of patients received evidence-based treatments for common disorders and preventive care. 61 The researchers examined treatment for a range of health conditions, using a national sample of medical records abstracts. For each quality criterion, a classification was applied to determine if the quality-of-care deficiency was one of underuse, overuse, or misuse. Greater problems were found with underuse (46 percent) than with overuse (11 percent). Quality of care varied by condition: senile cataracts scored highest, 78 percent of recommended care received, and alcohol dependence scored lowest, 10 percent of recommended care received. Overall, only about half of recommended care was received, frequently due to underuse of services.

Researchers have sought to identify why rates of conformance with evidence-based treatments are low. Frequently cited barriers to evidence-based practice include physician disagreement with the evidence, perception that patients will not accept treatment, low ratings of self-efficacy as a provider of the treatment, and difficulty of integrating the evidence-based treatment into existing practice. 62 More needs to be learned how to assist health care providers to overcome barriers to the adoption of evidence-based practices.

The described data sources and methods can be applied in clinical settings to assess conformance to evidence-based quality criteria and provide feedback to clinicians. If electronic health records are available, the feedback and reminders may be directly incorporated into the medical record and seen by the clinician at the time of a visit. Intermountain Health Care utilizes its electronic health records to monitor adherence to evidence-based quality standards and to provide decision support to clinicians when seeing patients. This strategy has contributed to substantial improvements in their quality performance. 63

Outcomes management system

In 1988, Paul Ellwood proposed the adoption of outcomes management system (OMS) as a method to build clinical intelligence on “what treatments work, for whom, and under what circumstances.” 64 OMS would require linking information on the patient’s experience with outcomes of care and information on diagnosis and treatment that would usually come from the medical record.

In 1991, the Managed Health Care Association, an employer organization, brought together a group of employers and their health plan partners who were interested in testing the OMS concept in health plans. 65 To do so would require a set of methods that could be widely applied across health plans with differing information systems. The methodology chosen was for each of 16 health plans to identify all adult enrollees with at least two diagnoses of asthma over the previous 2 years. A stratified sample was chosen with half of the enrollees having more severe asthma (e.g., hospitalization or emergency room visit in the past 2 years) and the other enrollees having less severe asthma (outpatient visits only). Each adult received a questionnaire asking about their asthma treatment and health status. Followup surveys were done in each of 2 successive years to track changes over time.

The findings were compared to national treatment recommendations for adult asthma. 66 Across the health plans, 26 percent of severe asthmatics did not have a corticosteroid inhaler, and 42 percent used it daily, as recommended. 67 Only 5 percent of patients reported monitoring their asthma using a home peak flow meter. Approximately half of adults with asthma reported having the information they needed to avoid asthma attacks, to take appropriate actions when an asthma flare-up occurs, and to adjust medications when their asthma gets worse. Health plans used the baseline findings to develop quality-improvement interventions, which varied across health plans. Followup surveys of the patient cohort provided feedback to health plans on their success in improving asthma treatment and outcomes over time.

This chapter has provided a definition and history of the field of health services research and discussed how this field is examining quality-of-care issues and seeking to improve quality of care. Comparisons of current practice to evidence-based standards with feedback to clinicians and the integration of patient-reported outcomes are two examples of how HSR tools can be used to provide quality-improvement information for health care organizations. These examples utilize multiple data sources, including medical records, patient surveys, and administrative data. The opportunities for nurse researchers to provide invaluable contributions to the growing field of health services research are innumerable.

• Cite this Page Steinwachs DM, Hughes RG. Health Services Research: Scope and Significance. In: Hughes RG, editor. Patient Safety and Quality: An Evidence-Based Handbook for Nurses. Rockville (MD): Agency for Healthcare Research and Quality (US); 2008 Apr. Chapter 8.
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