What are the key ethics issues in health systems research?
Health systems research is a field that draws on different disciplinary traditions and methodological approaches. Its overall aim is to influence policy and wider action to improve health system performance.
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.
Ethics in health systems research is ‘everybody’s business’
Blog: Molyneux S. et al (2017) Ethics in health systems research is ‘everybody’s business’, Health Systems Global This blog provides a summary of some of the discussions related to ethics at the Fourth Global Symposium on Health Systems Research which was held in 2016 in Vancouver. It explores: the links between health systems research and […]
A bioethical framework for health systems activity: a conceptual exploration applying ‘systems thinking’
Krubiner CB and Hyder A. (2014) A bioethical framework for health systems activity: a conceptual exploration applying ‘systems thinking’, Health Systems, June 2014, Volume 3, Issue 2, pp 124–135 Recognizing that the health system is a complex and dynamic network of actors and activities, this paper seeks to push the field of bioethics to develop a more holistic approach […]
If Research Is a Pillar of Health System Development, Why Only Focus on Clinical Trials?
Pratt B., Ali J. and Hyder A.A. (2016) If Research Is a Pillar of Health System Development, Why Only Focus on Clinical Trials? The American Journal of Bioethics Vol. 16, Iss. 6, 2016 The authors note that a small amount of bioethics literature supports linking health research to health system development as a matter of justice. […]
What Makes Health Systems Research in Developing Countries Ethical? Application of the Emanuel Framework for Clinical Research to Health Systems Research
Wassenaar D. and Rattani A. (2016) What Makes Health Systems Research in Developing Countries Ethical? Application of the Emanuel Framework for Clinical Research to Health Systems Research, Developing World Bioethics, Volume 16, Issue 3 December 2016, Pages 133–13 The growing importance of health systems research has opened debate about appropriate ethical frameworks and guidelines for […]
Health policy and systems research: towards a better understanding and review of ethical issues
Luyckx V.A., Biller-Andorno N., Saxena A. and Tran N.T (2017) Health policy and systems research: towards a better understanding and review of ethical issues, BMJ Glob Health 2017;2:e000314 Given the focus on health systems in the post-millennium development goal era and moving towards the sustainable development goals, there is a compelling need for a common framework for […]
Ethics of health policy and systems research: a scoping review of the literature
Pratt B., Paul A., Hyder A.A. and Ali J. (2017) Ethics of health policy and systems research: a scoping review of the literature, Health Policy and Planning, 2017, 1–21 Health policy and systems research (HPSR) is increasingly funded and undertaken as part of health system strengthening efforts worldwide. HPSR ethics is also a relatively new […]
Ethical challenges in designing and implementing health systems research: Experiences from the field
Hyder A.A. and Krubiner C. (2016) Ethical challenges in designing and implementing health systems research: Experiences from the field, AJOB Empirical Bioethics Vol. 7 , Iss. 3 Health systems research seeks to generate knowledge to improve the mechanisms for delivering quality health services and improving population health outcomes. It covers a wide range of research questions, […]
Ethical review of health systems research in low and middle income countries: a conceptual exploration
Hyder, A.A. et al. (2014) Ethical review of health systems research in low and middle income countries: a conceptual exploration American Journal of Bioethics. 14(2): 28-37 Hyder and colleagues provide a framework to begin to think about ethics in health systems research. They prompt us to consider eight different areas: (1) the nature of intervention; […]
The ethics of health systems research in low- and middle-income countries: A call to action
Hyder, A.A. et al. (2014) The ethics of health systems research in low- and middle-income countries: A call to action. Global Public Health. 9(9): 1008-1022 This article draws on learning from a two-day workshop on the ethics of health systems research in low- and middle-income countries. The article explores emerging ethical issues such as units […]
Conducting health-related social science research in low income settings: ethical dilemmas faced in Kenya and South Africa
Molyneux C, Goudge J, Russell S, Chuma J, Gumede T and Gilson L (2009) Conducting health-related social science research in low income settings: ethical dilemmas faced in Kenya and South Africa, Journal of International Development Volume 21, Issue 2 The value of the social sciences is increasingly recognised in health services and clinical research, contributing […]