How can health systems research inform the development of ethics guidance for greater health equity and justice?
By Bridget Pratt and Adnan A. Hyder
Helping improve health systems for disadvantaged and marginalised populations is an important value motivating health systems research in low and middle-income countries (LMICs). However, simply undertaking health systems research in LMICs does not necessarily generate the knowledge needed to achieve that goal.
An ethical framework: Research for health justice
To explore what form of health systems research in LMICs is needed to help reduce health disparities, we developed an ethical framework called “Research for health justice”. As Figure 1 shows below, it provides initial guidance on what research questions and populations ought to be selected, what research capacity strengthening ought to be performed, and what post-study benefits ought to be provided in health systems research in LMICs .
Figure 1: “Research for health justice” guidance for health systems research projects.
Currently, the “Research for health justice” framework constitutes a work-in-progress rather than a definitive set of prescriptions. It is open to revisions and negotiations in light of current practice; future conceptual research; and the experiences of researchers, policymakers, citizens, and others.
Testing the ethical guidance against research practice
It’s really important that the development of ethical guidance be informed by both theory and practice. For example, comparing theory-driven ethical guidance to research practice can identify gaps in the guidance and areas where it can be further strengthened. Identifying where alignment exists between ethical guidance and research practice also provides initial lessons on how guidance might be achieved. These lessons can inform researchers’ conduct of future research projects.
To improve the proposed framework, we tested its guidance against the experience of a health systems research project with equity objectives: the Maternal and Neonatal Implementation for Equitable Health Systems (Manifest) project. This participatory action research project was conducted in rural Uganda by investigators from Makerere University as part of the Future Health Systems consortium. Our case study included carrying out 21 interviews with investigators and research implementers, directly observing at study sites and reviewing study-related documents.
Improvements to ethical guidance
Our case study’s findings suggest several areas where the “Research for health justice” framework might be usefully revised:
- The framework’s requirement of working with the most disadvantaged populations within host countries may require freedom from completing obligations that preclude upholding it. For example, ensuring researchers safety. In Uganda, the Karamoja region has very poor health indicators but has been markedly affected by insecurity and violence, making it an unsafe environment for Makerere researchers to conduct studies.
- The framework should consider post-study commitments in health systems research more expansively by calling for creating lasting change to help reduce health disparities. What the guidance currently calls for is narrower than what was undertaken in equity-oriented research practice. Creating lasting change means research findings are translated into policy and practice in LMICs. It would therefore encompass an obligation to promote research uptake, including intervention sustainability where applicable, and the empowerment of local actors.
Our case study’s findings suggest areas where “Research for health justice” might be usefully expanded:
- Guidance on what policymakers and disadvantaged groups meaningful “inclusion” in health systems research priority-setting should entail is needed to ensure shallow and tokenistic participation is avoided. This would encompass a clearer description of the aims of citizen engagement under the framework, who should be engaged, at what levels and when.
Best practices for achieving consistency with ethical guidance
Our case study provides multiple initial lessons for other research teams. We suggest that alignment with the ethical guidance is facilitated where research teams:
- consider equity-related shortcomings of the health system when selecting their research topic and objectives
- consider sustainability when selecting research objectives and designing interventions
- partner with LMIC research users or beneficiaries to conduct studies
- conduct consultations across national, district, and local-levels, including with relevant vulnerable groups, when selecting research objectives and designing interventions
- employ strategies to promote intervention sustainability from early in the research project to its end, e.g. developing local capacity to implement an intervention, using existing structures to implement the intervention and multi-sectoral engagement.
Funder and consortia policies also promote the conduct of health systems research that aligns with “Research for health justice”. This happens where funders’ policies require and support decentralized consortia governance that empowers LMIC investigators, engagement with research users and beneficiaries in LMICs from research priority-setting onward and the development and implementation of research capacity strengthening and research uptake plans. Each of these requirements incentivises health systems research with features consistent with the ethical framework: inclusive priority-setting processes, development of health systems research capacity, and promoting lasting changes that help reduce health disparities.
Pratt, B. & 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 (Manifest) project in rural Uganda.” Journal of Empirical Research on Human Research Ethics
Image: Community Development Officer Nakawala Anita reporting to her Supervisor and Kadama sub-County Chief Baruka Madina in Kibuku district, Uganda. Nakawala worked with the research team from Makerere University through the Manifest project. Partnering with district health teams and relying on them and Community Development Officers to implement interventions promotes inclusion and sustainability, are both core aspects of 'Research for health justice'.