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.
Latin America is home to about 800 different Indigenous Peoples and Nationalities, the equivalent to 9·8% of its population. The average infant mortality rate in Indigenous children is 60% higher than that in non-Indigenous children. In 2018, Ecuador reported that 50·6% of its Indigenous population lived in poverty, compared with 20·9% of the non-Indigenous population. Between […]
Model for developing context-sensitive responses to vulnerability in research: managing ethical dilemmas faced by frontline research staff in Kenya
Health research in low-resource settings often involves individuals and populations defined as ‘vulnerable’. There is growing attention in the literature to the ethical dilemmas that frontline research staff face while conducting such research. However, there is little documented as to how research staff might support one another in identifying and handling these dilemmas in different […]
Health policy and systems research (HPSR) is increasingly being funded and conducted worldwide. There are currently no specific guidelines or criteria for the ethical review and conduct of HPSR. Academic debates on HPSR ethics in the scholarly literature can inform the development of guidelines. Yet there is a deficiency of academic bioethics work relating to […]
Global health research should generate new knowledge to improve the health and well-being of those considered disadvantaged and marginalised. This goal motivates much of the global health research being undertaken today. Yet simply funding and conducting global health research will not necessarily generate the knowledge needed to help reduce health disparities between and within countries. […]
A systematic review on ethical challenges of ‘field’ research in low-income and middle-income countries: respect, justice and beneficence for research staff?
Primary data collection in low-income and middle-income countries (LMICs) is associated with a range of ethical complexities. Considerations on how to adequately ensure the well-being of research staff are largely neglected in contemporary ethics discourse. This systematic review aims to identify the ethical challenges that research staff across different hierarchical levels and scientific disciplines face […]
Sharing power in global health research: an ethical toolkit for designing priority-setting processes that meaningfully include communities
To promote social justice and equity, global health research should meaningfully engage communities throughout projects: from setting agendas onwards. But communities, especially those that are considered disadvantaged or marginalised, rarely have a say in the priorities of the research projects that aim to help them. So far, there remains limited ethical guidance and resources on how […]
Alliance for Health Policy and Systems Research (2019) Ethical considerations for health policy and systems research. Geneva: World Health Organization The field of HPSR and its conduct pose important challenges for both researchers and research ethics committees (RECs) about the interpretation and application of the principles for ethical conduct of health research to policy and […]
In this film members of the Thematic Working Group in Health Systems Research reflect on some of the potentially distinct and unique challenges that are faced by health systems researchers. For example: There are a variety of methods and measures in health systems research – it is a diverse field. These research ‘interventions’ need to […]
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 […]