Global health research partnerships are increasingly taking the form of consortia. Recent scholarship has proposed what features of governance may be necessary for these consortia to advance justice in global health. That guidance purports three elements of global health research consortia are essential — their research priorities, research capacity development strategies, research translation strategies — and should be structured to promote the health of the worst-off globally. This paper adopted a reflective equilibrium approach, testing the proposed ethical guidance against the experience of a global health research consortium with equity objectives. Case study research was performed with Future Health Systems (FHS), a health systems research consortium funded over two phases. Data on FHS Phase-2 were gathered through in-depth interviews with steering committee members and junior researchers and collection of consortium-related documents. Thematic analysis of the data for consistency with the proposed guidance generated recommendations for how the guidance might be better articulated and identified areas where it could usefully be expanded. Factors facilitating FHS alignment with the ethical guidance were also identified, including early engagement and partnership with low and middle-income country stakeholders, the learning developed during FHS Phase-1, and aspects of the grant program funding it.
Get full access to this article
View all access options for this article.
References
1.
H.M.Dockrell, “Presidential Address: The Role of Research Networks in Tackling Major Challenges in International Health,”International Health2, no. 3 (2010): 181-185.
2.
B.Pratt and A.A.Hyder, “Governance of Transnational Global Health Research Consortia and Health Equity,”American Journal of Bioethics16, no. 10 (2016): 29-45.
3.
Id.
4.
S.R.Benatar and P.A.Singer, “New Look at International Research Ethics,”British Medical Journal321, no. 7264 (2000): 824-826, at 826.
5.
A.J.London, “Justice and the Human Development Approach to International Research,”Hastings Center Report35, no. 1 (2005): 24–37; B.Pratt and A.A.Hyder, “Global Justice and Health Systems Research in Low and Middle-Income Countries,”Journal of Law, Medicine, & Ethics43, no. 1 (2015): 143-161; B.Pratt and B.Loff, “A Framework to Link International Clinical Research to the Promotion of Justice in Global Health,”Bioethics28, no. 8 (2014): 387-396.
6.
See Pratt, supra note 2.
7.
J.P.Ruger, “Global Health Justice and Governance,”American Journal of Bioethics12, no. 12 (2012): 35-54; J.P.Ruger, “Shared Health Governance,”American Journal of Bioethics11, no. 7 (2011): 32-45; L.O.Gostin, Global Health Law (Cambridge, MA: Harvard University Press, 2014).
8.
Shared health governance is drawn from a theory of justice called the health capability paradigm, which has roots in capability theory and specifically focuses on health justice. The rationale for relying on shared health governance to develop this framework is discussed in detail in Pratt, supra note 2. Briefly, an account of the type of governance required to advance global health justice was viewed as especially useful to apply to generate initial guidance on what is necessary for consortia governance to help reduce health disparities between and within countries. However, few philosophers offer an account linking principles of global health justice to health governance (See Ruger 2012, supra note 7). Those that do include Jennifer Ruger, who has proposed shared health governance, and Lawrence Gostin, who has proposed global governance for health (See Ruger, supra note 7; See Gostin, supra note 7). Shared health governance’s emphasis on the “jointness” and “interaction” aspects of governance was seen as particularly relevant to global health research consortia (See Ruger 2011, supra note 7, at 37). As a result, it was deemed more applicable to the global health research consortia context and was selected as a starting point to derive ethical guidance.
9.
See Ruger, supra note 7. Shared health governance relies on a particular conception of health justice. The ideals of health justice are defined as reducing shortfall inequalities in the health of individuals worldwide, with priority going to those who are worst-off in terms of their health (See J.P.Ruger, “Global Health Justice,”Public Health Ethics2, no. 3 (2009): 261–275). We acknowledge that the concept of justice in global health continues to be a matter of debate and that this does not comprise the only way of defining it. However, the concept used by shared health governance reflects a useful starting point, as it is drawn from one of the few political philosophy theories to address health justice in-depth — namely, the health capability paradigm — and its components are consistent with other theories of justice such as those of Martha Nussbaum, Madison Powers and Ruth Faden, Norman Daniels, and Sridhar Venkatapuram (See Pratt, supra note 2). Future conceptual work should, nonetheless, explore what it means for consortia governance to further the ideals of alternate concepts of global health justice.
10.
See Pratt, supra note 2. To develop the framework, in some instances, shared health governance was supplemented by other accounts. In particular, Iris Marion Young’s work on inclusion in decision-making and the social division of labor was used to generate more specific guidance on how consortia should share sovereignty and share resources in contexts of power disparities (See Pratt, supra note 2).
11.
See Pratt, supra note 2.
12.
M.de Vries M and E.van Leeuwen, “Reflective Equilibrium and Empirical Data: Third Person Moral Experiences in Empirical Medical Ethics,”Bioethics24, no. 9 (2010): 490-498; T.L.Beauchamp and J.F.Childress, Principles of Biomedical Ethics (New York: Oxford University Press, 2009).
13.
Health systems research produces new knowledge to improve the performance of health systems. Such research may assess health system performance, explore the causes of poor performance, and/or develop and evaluate interventions to improve health system functioning. Common interventions consist of novel delivery methods for existing efficacious health services, output-based payment mechanisms to boost staff productivity at health facilities, or community-based health insurance schemes. Since health systems research methods are determined by the nature of the research question, they can encompass a wide range of quantitative and qualitative methods such as observational studies, cluster trials, economic evaluations, case studies, and participatory action research.
14.
See Pratt, supra note 2.
15.
Id.
16.
Id.
17.
Here, the framework is not suggesting that capacity-building cannot or should not be performed for consortia partners from high-income countries. Instead, it is arguing that high-income country partners have an obligation to strengthen the capacity of LMIC partners as a matter of justice.
18.
See Pratt, supra note 2.
19.
Id.
20.
Id.
21.
Department for International Development (DFID), Managing the Inception Phase of Research Programme Consortia (London: DFID, 2010); DFID, Research Programme Consortia: Terms of Reference (London: DFID, 2009).
22.
D.L.Hruschka, D.Schwartz, D.C.St. John, E.Picone-Decard, R.A.Jenkins, and J.W.Carey, “Reliability in Coding Open Ended Data: Lesson Learned from HIV Behavioral Research,”Field Methods16, no. 3 (2004): 307-331; J.L.Campbell, C.Quincy, J.Osserman, and O.K.Pedersen, “Coding In-Depth Semistructured Interview: Problems of Unitization and Inter-coder Reliability and Agreement,”Sociological Methods & Research42, no. 3 (2013): 294-320.
23.
See Campbell, supra note 22.
24.
See Campbell, supra note 22. This approach reflects the fact that, in cases where one coder is more knowledgeable than the other about the topic under study, inter-coder reliability is typically quite low and never reaches a high level, even where numerous iterations of coding are performed. As a result, scholars have adopted a ‘‘negotiated agreement’’ approach for assessing reliability (See Campbell, supra note 22). For this study, the lead coder was much better versed in the requirements of shared health governance.
25.
Inter-coder agreement at the primary level was assessed by dividing the number of categories agreed upon after negotiation by the total number of categories identified. Inter-coder agreement at the secondary level was assessed by dividing the number of categories and sub-categories agreed upon after negotiation by the total number of categories and sub-categories identified. For example, where there were 116 categories and sub-categories agreed upon and two that weren’t, inter-coder agreement was 98% (116/118).
26.
Campbell et al., supra note 22. Here, the second coder deferred to the lead coder in 71% and 85% of cases where disagreement occurred in the first and second coding iterations respectively.
27.
B.Pratt, D.Zion, K.M.Lwin, P.Y.Cheah, F.Nosten, and B.Loff, “Linking International Clinical Research with Stateless Populations to Justice in Global Health,”BMC Medical Ethics15(2014): 49.
F.Breur and R.Wolff-Michael, “Subjectivity and Reflexivity in the Social Sciences: Epistemic Windows and Methodological Consequences,”Forum: Qualitative Social Research4, no. 2 (2003): Art. 25.
30.
See Pratt 2015, supra note 5.
31.
B.Kanjilal, P.G.Mazumdar, M.Mukherjee, S.Mondal, D.Barman, S.Singh, and A.Mandal, Health Care in the Sundarbans (India): Challenges and Plan for a Better Future (Kolkata, India: IIHMR, 2010).
32.
Id.
33.
See DFID 2009, supra note 21.
34.
See DFID 2009, supra note 21.
35.
The needs assessment covered three dimensions — internal stakeholders (staff and researchers from the FHS LMIC partner), external stakeholders (users of research: policy makers, implementers, partner agencies at the operational level, community level organizations), and inter-FHS (mutual capacity development among FHS partners). Capacity development needs amongst internal stakeholders were evaluated in the following areas: research leadership for junior researchers, career development, independent communication, and policy influence. Capacity development needs amongst external stakeholders were evaluated in terms of their ability to be a partner in the research process and to use research products.
36.
Topics have included multi-day training on complex adaptive systems methods (China), multi-day training on participa-tory action research methods (Uganda), half-day training on case study methods (China), two-day training on developing policy briefs (Uganda), and training on analysing qualitative data (China) (See Future Health Systems, Future Health Systems: DFID Inception Phase Report (Baltimore, USA: Future Health Systems, 2011).
37.
See FHS, supra note 36.
38.
S.Bennett, J.Knezovich, A.Bhuiya, and D.Peters, Future Health Systems: Year 2 Annual Report (Baltimore, USA: Future Health Systems, 2013).
39.
Other strategies used to ensure that FHS findings inform academics and policymakers worldwide consisted of organising symposiums and consultations; establishing FHS members as leaders of Health Systems Global (an international membership organization focused on promoting health systems research and knowledge translation); establishing a thematic working group on the private sector in health at Health Systems Global; and taking advantage of FHS steering committee members’ role in developing a new World Health Organization (WHO) strategy on people-centered and integrated health services. The FHS Year 2 Annual Report stated that the “WHO draft strategy has drawn heavily upon the research and thinking done within FHS and upcoming meetings and presentations regarding the strategy provide an excellent forum to engage with key global and national stakeholders in health services.”
40.
See DFID 2010, supra note 21.
41.
V.Welch, J.Jull, J.Petkovic, R.Armstrong, Y.Boyer, LGCuervo, SJLEdwards, A.Lydiatt, D.Gough, J.Grimshaw, E.Kristjansson, L.Mbuagbaw, J.McGowan, D.Moher, T.Pantoja, M.Petticrew, K.Pottie, T.Rader, B.Shea, M.Taljaard, E.Waters, C.Weijer, GAWells, H.White, M.Whitehead, and P.Tugwell, “Protocol for the Development of a CONSORT-Equity Guideline to Improve Reporting of Health Equity in Randomized Trials,”Implementation Science10 (2015): 146.
