What are the key ethics issues in health systems research?

Health policy and systems research focuses on:

• The performance of health systems and their sub components (resources, organisations, and services)
• How links between the sub components shape performance, and what forces influence those links
• How to strengthen health system performance over time

Existing guidelines and research ethics committee members’ training tends to focus predominantly on the ethics of biomedical research. This is challenging for health systems research, which often operates at system or population as opposed to individual level.  Also, in some health systems research (for example some embedded or participatory research) the distinction between research and practice that is central to much biomedical research ethics guidance is deliberately blurred.

There are very few guidelines and papers which deal directly with the ethics of health systems research. We have gathered together the ones that do in the Useful Resources section below. Many of these papers were led by Bridget Pratt and Adnan Hyder who have put considerable effort into synthesising existing literature and adding analysis based on their work within health systems consortia, for example, Future Health Systems.

The resources begin with a 2019 paper from the Alliance for Health Policy and Systems Research. It outlines a series of “points to consider” for the identification, consideration and communication of ethical issues.

This is followed by a recording of a webinar organised by the Health Systems Global Thematic Working Group on the Ethics of Health Systems Research. The Group is a great community of practice for those who want to share and learn on the topic. The webinar tackles issues such as how we conceptualise ethics in relation to non-human subjects (such as hospitals or communities), consent, and ensuring that risks are minimised and benefits maximised.

We have included a blog by Molyneux et al (2017) because it gives a quick round-up of what ethical issues were discussed at the Fourth Global Symposium on Health Systems Research raising issues such as social justice, micro-level ethics questions, and obligations and responsibilities in the face of multiple needs and inequities.

Having provided this overview, a series of papers provides more detailed insights.  Krubiner and Hyder (2014) provide overarching domains in which we could consider health systems ethics: holism, sustainability, evidence and effectiveness, efficiency, public engagement and transparency, accountability and feedback, equity and empowerment, justice and fairness, responsiveness, collaboration, and quality.

Pratt et al. (2016) call upon the field of bioethics to move their focus beyond clinical trials to look at issues such as operations research, implementation research, health systems research, and research on the social determinants of health.  The paper by Wassenaar and Rattani (2016) applies the Emanuel Framework for Clinical Research to health systems research to see how this might further Hyder’s call for more contemplation of ethics. The paper by Luyckx et al. (2017) draws on an expert meeting and calls for greater understanding and exploration of these issues within Ethics Review Boards.

Pratt et al. (2017) lead us through a scoping review of the literature related to health systems research, a conceptual exploration of the issue, how systems thinking might be applied to the topic, a review of field experiences and a call to action.