Introducing an ethics guide for health systems researchers

By Lynda Keeru As researchers, many of us worry about the value of our work and interventions, and even about whether we are doing more harm than good.  These lurching feelings of discomfort could begin to be addressed through ethical reflection, review, and analysis, but all too often we see this as something that occurs somewhere else:  in elite spaces, among people higher up, behind closed doors, or in institutional review boards. The new guide to ethics in health policy and systems research was started with this in mind; with an aim to be a resource for health systems researchers to find and share information to support practical, applied, day-to-day ethics. There are very few guidelines and papers which deal directly with the ethics of health systems research. As mentioned on the website, existing guidelines and research ethics committee members’ training tends to focus predominantly on the ethics of biomedical research. This is challenging for health policy and systems research, which often operates at system or population as opposed to individual level. This resource aims to bring together the available evidence on ethics and health systems research and casts the net wider for papers, case studies and other outputs that can help illuminate some of the challenges we all face. The website is divided into different sections: the Overview section provides information on issues such as ethics, power, positionality, and progress. The section on the Day-to-day process of research highlights some of the common challenges that health systems researchers face and provides references which explore these issues in greater detail. Under, ‘Choosing questions, study designs and methods’, a major issue raised is that much funded research in low- and middle-income countries focuses on a narrow set of questions related to service delivery and scale up rather than on broader health system research questions that are responsive to local needs or focused on equity. In the Building relationships section, it is noted that: “Strong respectful relationships – between investigators, between researchers and the communities and institutions that they work in, with policy makers, practitioners and other users of research – are key to research success and vital to ethical practice.” Data collection and the issues that surround it such as the complex interplay between vulnerability and agency are not new subjects to researchers. This section provides resources like case studies exploring the vulnerabilities of communities affected by HIV in Kenya and how ethical issues that arose in the course of the work were addressed. To wrap us up is the essential subject of analysis and data sharing.  It is noted here that: “Analysing data throws up a number of ethical dilemmas for health systems researchers…including having to carefully consider the physical and socio-political positions of researchers which have implications for the entire research process, including analysis, and the importance of considering collaborators and research impact in analysis plans.” Overall, there are a wealth of resources assembled in this website that could be valuable for health systems researchers grappling with a range of topical issues.  What issues and whose views are heard and prioritized in research? Which priorities are set and through which processes?  What are the power relations between researchers, funders, decision makers and users of health system? How is funding generated and spent in the creation of new knowledge? These are all issues that most health systems researchers are familiar with but don’t often think of as ethical issues and the additional lens that this can bring to our reflections. This website in exposing us to practical, applied ethics can begin to help us think through such issues. Have a look and let the RinGs team know if you have resources you would like added to the site!!