Moving forward an ethical agenda in health systems research: Areas for discussion and routes for the future
Recently I attended a meeting convened by the World Health Organization that aimed to start the process of developing guidance for research ethics committee’s review of health systems research (HSR). This blog incorporates some reflections of the key points discussed during the meeting.
Despite the growth of HSR being conducted worldwide, we lack guidance and consensus statements regarding the ethical considerations that are specific to the field. One area that I think is particularly necessary to think about is justice. This is because HSR has been identified as an essential means to reduce health disparities through helping identify how governance, service delivery, financing, and human resource components of health systems can best be organized to improve access and financial protection for disadvantaged groups in low- and middle-income countries.
Ethical considerations relating to equity arise during all phases of HSR, from the selection of research questions and participants to research design to implementation and monitoring and evaluation:
Where participants in HSR are representative of a relatively limited and privileged subset of the population, HSR will not be set up to determine how disadvantaged groups will be affected by, for example, changes to models of service delivery or insurance schemes.
Gender and power
Ethical concerns relating to justice in HSR can also be linked to considerations of gender and power. Take community entry and consent processes as an example:
“The Ekjut intervention in Jharkhand, India tries to help women in underserved communities to take charge of their health needs…. How ethical is it to take consent from (mostly male) guardians who embody the social structure within which the [female] participants will be maneuvering?”
Health systems research often relies on gatekeepers to obtain consent or permission for studies to proceed in particular villages or districts. For studies involving female participants, what should be done if gatekeepers are primarily male? Can they really represent the interests and concerns of women in their locations? There are also likely to be many other differences between potential research participants and gate-keepers in terms of age, religion, experience, interest and ability to raise and respond to concerns about research. Given these complexities, how can appropriate representatives of individuals and communities be identified and consulted with, at what stage of studies, and to what end?
These are common dilemmas for all types of research, but are amplified for health systems research, where consent is sought primarily at a group/cluster level. When study interventions aim to change the status quo – which is common in health systems research using participatory action methods – working with individuals who represent traditional power structures and authorities raises particular dilemmas regarding their ability to prioritise the interests of the most marginalised men and women in society.
Taking health systems research ethics to the next level
It is essential to identify how considerations of justice should be built into the different stages of the health systems research process. For example, considerations might include:
- How we define disadvantage and marginalisation. In local terms, national terms, global terms, or according to what criteria, e.g. those proposed by Wolff and deShalit?
- Whether the research population adequately includes disadvantaged groups from the host country?
- Whether the research question(s) create new knowledge that can improve health systems for marginalised groups?
- If disadvantaged groups are included as part of community engagement during research design and implementation. How are they given an equal opportunity to participate?
- Whether monitoring and evaluation include measuring study interventions’ impact on inequalities in health and access to services between groups?
But this also raises the question: if HSR is intended to work to reduce health inequities during all stages of the research process, whose role is it to ensure that these considerations are addressed by proposed projects? Research ethics committees are the main body of oversight for ethics matters in research. Does it all fall on their under-resourced shoulders? I think that research ethics committees certainly have a part to play in ensuring equity considerations are dealt with by proposed projects. They can at least help ensure that proposed research does not exacerbate existing inequities and vulnerabilities and ideally support the development of research questions and/or designs that give voice to those who often do not have one.
Yet making these committees solely responsible for addressing the above considerations may not be the most effective approach. Other players have the power to play a significant role. For example, funders, research institutes and national governments set policies about the type of research questions they’re interested in and investing in. They can also set policies for how the research they support is conducted. Ultimately, these actors have clear responsibilities for ensuring that HSR addresses equity considerations. But their responsibilities need to be better defined.
Pratt, B., & Hyder, A. A. (2015a). Applying a Global Justice Lens to Health Systems Research Ethics: An Initial Exploration. Kennedy Institute of Ethics Journal, 25(1), 35-66.
Pratt, B., & Hyder, A. A. (2015b). Global Justice and Health Systems Research in Low‐and Middle‐Income Countries. The Journal of Law, Medicine & Ethics, 43(1), 143-161.
Pratt, B. (2014). Connecting Health Systems Research Ethics to a Broader Health Equity Agenda. The American Journal of Bioethics, 14(2), 1-3.
*Dr. Bridget Pratt is research fellow at the University of Melbourne and in the Department of International Health at Johns Hopkins Bloomberg School of Public Health and Johns Hopkins Berman Institute of Bioethics.
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