Progress

In this article we argue that the social value of health research should be conceptualized as a function of both the expected benefits of the research and the priority that the beneficiaries deserve. People deserve greater priority the worse off they are. This conception of social value can be applied for at least two important purposes: (1) in health research priority setting when research funders, policy-makers, or researchers decide between alternative research projects; and (2) in evaluating the ethics of proposed research proposals when research ethics committees (RECs) assess whether the social value of the research is sufficient to justify the risks and burdens to research participants and others. In assessing how far a proposed research project will advance the interests of people who are more disadvantaged, research priority setters and RECs should examine (at least) the diseases that the research targets and the type of research. Just as certain diseases impose a greater burden on people who are more disadvantaged, so certain types of intervention and forms of research are more likely to benefit people who are more disadvantaged. We outline which populations are likely to be representative of the global worst off and identify what types of health research, and which disease categories, are priorities for these populations.

Barsdorf N. and Millum J. (2017) The Social Value of Health Research and the Worst Off, Bioethics. 2017 Feb;31(2):105-115

The Fourth Global Symposium on Health Systems Research was themed around ‘Resilient and responsive health systems for a changing world.’ This commentary is the outcome of a panel discussion at the symposium in which the resilience discourse and its use in health systems development was critically interrogated. The 2014–15 Ebola outbreak in West-Africa added momentum for the wider adoption of resilient health systems as a crucial element to prepare for and effectively respond to crisis. The growing salience of resilience in development and health systems debates can be attributed in part to development actors and philanthropies such as the Rockefeller Foundation. Three concerns regarding the application of resilience to health systems development are discussed: (1) the resilience narrative overrules certain democratic procedures and priority setting in public health agendas by ‘claiming’ an exceptional policy space; (2) resilience compels accepting and maintaining the status quo and excludes alternative imaginations of just and equitable health systems including the socio-political struggles required to attain those; and (3) an empirical case study from Gaza makes the case that resilience and vulnerability are symbiotic with each other rather than providing a solution for developing a strong health system. In conclusion, if the normative aim of health policies is to build sustainable, universally accessible, health systems then resilience is not the answer. The current threats that health systems face demand us to imagine beyond and explore possibilities for global solidarity and justice in health.

van de Pas R., Ashour M., Kapilashrami A. and Fustukian S.(2017) Interrogating resilience in health systems development, Health Policy and Planning, Volume 32, Issue suppl_3, 1 November 2017, Pages iii88–iii90

This editorial identifies three areas of ethical tension in health systems research: 1) the dominance of global targets in priority setting which may crowd out health systems research that is responsive to local needs in favour of research on service delivery and scale up of interventions geared to support the achievement of global goals like universal health coverage; 2) that capacity development in health systems research tends to focus at the individual and institutional level rather and not to focus at the health system level; and 3) the unequal allocation of health research resources between biomedical and non-biomedical research.

Pratt B. (2014) Connecting Health Systems Research Ethics to a Broader Health Equity Agenda, The American Journal of Bioethics, Volume 14, 2014 – Issue 2

Recent scholarship has considered what, if anything, rich people owe to poor people to achieve justice in global health and the implications of this for international research. Yet this work has primarily focused on international clinical research. Health systems research is increasingly being performed in low- and middle-income countries and is essential to reducing global health disparities. This paper provides an initial description of the ethical issues related to priority setting, capacity-building, and the provision of post-study benefits that arise during the conduct of such research. It presents a selection of issues discussed in the health systems research literature and argues that they constitute ethical concerns based on their being inconsistent with a particular theory of global justice (the health capability paradigm). Issues identified include the fact that priority setting for health systems research at the global level is often not driven by national priorities and that capacity-building efforts frequently utilize one-size-fits-all approaches.

Pratt and A. A. Hyder (2015) Applying a Global Justice Lens to Health Systems Research Ethics: An Initial Exploration, Kennedy Institute of Ethics Journal, Volume 25, Number 1, March 2015, pp. 35-66

Health systems research is increasingly identified as an indispensable means to achieve the goal of health equity between and within countries. While conceptual work has explored what form of health systems research in low and middle-income countries (LMICs) is needed to promote health equity, there have been few attempts to investigate whether it is being performed in practice. This paper describes the results of a survey undertaken with health systems researchers worldwide (n = 104) to assess how equity-oriented current practice is in LMICs. Respondents were asked to answer all survey questions in relation to the externally-funded health systems research project in a LMIC(s) on which they had spent the most time during the past five years—referred to as the “index study.”  Data analysis indicates that 30% of respondents participated in health systems research focused on populations in LMICs that are worst-off in terms of their health. All respondents participated in research that focused on improving equity in at least one aspect of health systems (e.g. service utilisation, quality of care, insurance coverage). Actors solely from high-income countries (principal investigators, co-investigators, funders) were primarily responsible for selecting research questions in 36% of index studies. 28% of studies that involved collaboration resulted in LMIC researchers being awarded a graduate degree. The most common forms of institutional capacity-building in collaborative studies were increased links with policymakers (72%), increased links with other institutions (64%), and the training of researchers in HSR (51%). Of the completed intervention studies that demonstrated efficacy, 50% of those interventions had been implemented poststudy and 25% would be implemented soon.  These findings suggest that health systems research in LMICs is equity oriented in some respects, but has clear room for improvement, particularly in terms of the selection of populations upon whom to focus studies.

Pratt, B. et al. (2015) Promoting equity through health systems research in low- and middle-income countries: Practices of researchers, AJOB Empirical Bioethics Vol. 7 , Iss. 3,2016

An ethical framework called “research for health justice” provides initial guidance on how to link health systems research in low- and middle-income countries to health equity. To further develop the largely conceptual framework, we tested its guidance against the experience of the Maternal and Neonatal Implementation for Equitable Health Systems (Manifest) project, which was performed in rural Uganda by researchers from Makerere University. We conducted 21 in-depth interviews with investigators and research implementers, directly observed study sites, and reviewed study-related documents. Our analysis identifies where alignment exists between the framework’s guidance and the Manifest project, providing initial lessons on how that was achieved. It also identifies where nonalignment occurred and gaps in the framework’s guidance. Suggestions are then made for revising and expanding “research for health justice.”

Pratt B. and Hyder A.A. (2017) Linking Participatory Action Research on Health Systems to Justice in Global Health: A Case Study of the Maternal and Neonatal Implementation for Equitable Health Systems Project in Rural Uganda, Journal of Empirical Research on Human Research Ethics, Vol 13, Issue 1, pp. 74 – 87