By Anna Chiumento, member of the HSG Ethics of Health Systems Research TWG and ESRC Post-Doctoral Fellow at the Institute of Psychology, Health and Society, University of Liverpool
As a PhD graduate with a research interest in exploring researchers’ everyday experiences of ethics when conducting global mental health research, I was very keen to attend my first Health Systems Research Symposium in Liverpool in October. Given my research interests, the event that immediately stood out in the symposium programme was “Navigating day-to-day ethical dilemmas in Health Policy and Systems Research (HPSR)”. On a sunny Monday afternoon I made my way very early to ensure I got a seat to participate in what I hoped would be a stimulating afternoon of discussion and learning with fellow researchers, practitioners, and policymakers.
Understand and addressing ethical dilemmas for HPSR
This skills-building session straight away moved beyond a biomedical model of research ethics that can constrain ethics-talk in the confines of “autonomy via informed consent”, “benefits/risks”, and “do no harm”. As we saw in this session, the ethical issues that arise for those conducting HPSR move beyond these categories, reinforcing that a broader approach is needed.
Bridget Pratt shared findings of a scoping review of health systems and policy research. This review foregrounded gaps in the biomedical ethical framework when applied to HPSR. It highlighted shortcomings in relation to justice – generally seen as a guiding norm in health policy and systems research and practice. Gaps included how HPSR should be structured to address global and local health disparities, how priority setting can be ethically undertaken, and determining the ethicality of testing interventions that are unlikely to be sustainable. This review also shows the limitations to an individualised risk/benefit analysis which isn’t necessarily applicable to HPSR which has to take into account the individual, community, and health systems levels.
Identifying and responding to ethical ‘moments’
The session then moved on to explore the dilemmas faced by frontline researchers through session participants sharing examples of everyday ethical dilemmas encountered while conducting health systems research in South Africa, Kenya and India. These stimulated critical ethical reflection and discussion touching upon diverse topics such as the ‘boundary space’ or ‘positionality’ occupied by researchers’ when conducting embedded ethnographic research (i.e. issues and negotiations related to the ambiguity between roles of researcher/co-worker/health provider); and the researchers’ responsibilities towards youths learning about their health status (e.g. EBOLA, HIV, mental health diagnosis) during the course of research. These examples captured the ‘ethical moments’ that arise in fieldwork, illuminating the (dis)comfort of everyday research encounters for discussion and analysis.
To aid researchers identifying and responding to ethical dilemmas, Maureen Kelley introduced a “Practical ethics guide” that will be shared in the near future. This guide aims to aid researchers to identify the ethical issue at hand, the actors involved, and the urgency of a response. It then seeks to identify possible solutions, a plan of action, and an evaluation of the potential consequences of each solution. Once a plan has been made, there is a final step of identifying additional training needs or follow-up actions, and to document lessons learned.
One approach to support identifying and acting on ethics dilemmas in this way is through facilitated discussions, which as described by Sassy Molyneux can be used as part of planned supervision or on an ad-hoc basis as needed. She also emphasised the importance of carefully sharing learning from these ethical encounters back to health system and other collaborators to support positive change where appropriate, recognising that this feedback process can itself present further ethical dilemmas. Overall, the “practical ethics guide” was simple but powerful in its ability to guide researchers through the process of surfacing and responding to ethical dilemmas.
Reflections from the session, bringing it back to my own ethical experiences
I felt privileged to have participated in a session where researchers shared their ethical experiences. Each case study discussion reverberated around the room as others reflected upon their own experiences and contemplated the approach they might take if faced with similar dilemmas. The session was engaging and participatory, with a genuine interest from everyone in the room to hear, and learn, from one another.
This was the ethics of the everyday, it doesn’t appear pre-packaged neatly into the four principles of medical ethics, but quietly as ethical moments that emerge through the practice of research. It was ethics grounded in the experiences and needs of frontline researchers, and that responded to these experiences and needs by presenting practical tools to enhance approaches to the day-to-day management of ethical issues. These weren’t packaged as “solutions”, but as ways to enhance critical thinking and reflection that engages with the complexity of managing everyday ethical encounters in research.
From my PhD research findings and my own research experience, promoting approaches such as these can only act to enhance the HPSR we conduct. I strongly encourage those unable to join this session to request the reviews and tools and resources that were shared (contact SMolyneux@kemri-wellcome.org), and maybe even join the TWG! For more information see the Ethics for Health Systems Research Thematic Working Group Page.
Image credit: Toby Phillips Photography