“Better ethics - better research”: Ethics and ethnographic research in NHS and social care settings

A key problem facing those of us who routinely use ethnographic approaches in health and social care research is consideration of the ethical issues associated with this form of applied social science research which uses unobtrusive methods such as qualitative observation, interviews and documentary analysis.  

Along with Nici Mackintosh from The University of Leicester, I co-lead a symposium at Green Templeton College, Oxford on March 28^th 2025, supported by my NIHR Senior Investigator Award and the College of Life Sciences, University of Leicester.

The event was designed to bring together health researchers, ethics and research governance and support stakeholders, NIHR funder, and patient and public representatives to look at some of the challenges surrounding ethical governance and the conduct of ethnographic research in NHS and social care settings.

During the half-day symposium, we heard from researchers, Stephen Hibbs (Queen Mary’s University of London) and Shadreck Mwale (Geller Institute of Ageing and Memory University of West London) about their first-hand experiences of frustrating delays making ethics applications and difficult conversations with ethics committees. They noted that challenges worryingly can translate into consideration whether to change the study questions and design to make the process easier i.e., to drop key ethnographic components in favour of methods that the RECs appear more able to understand. However, we also heard how ethnography ‘gets’ culture and can surface experiences and ideas that cannot be gained using other methods. Shadreck spoke of recognising the need to protect the most vulnerable, but challenged us (and RECs) to ask what the ‘real’ ethical challenges are.

Helen Snooks (Swansea University) summarised findings from a consultation with the Health Services Research community on questions of research ethics, R&D approvals and Information Governance. The HSRUK report concluded that the processes (including research governance) were disproportionate for low-risk studies, and cause significant delay. Helen helpfully reminded us that there were Information Governance and Data Protection challenges surrounding qualitative and ethnographic work, which often added to delays associated with ethics processes.

Jonathon Montgomery (University College London) provided a view as a former Chair of the Health Research Authority (2012-19). He helpfully situated the ethics process within the historical context of bad science and previous scandals. He outlined the importance of this gatekeeping role and argued that REC processes and panels have come a long way from multiple Local ethics committees  all doing their own thing, but noted that despite improvements, adverse events still happen and  new risks need to be managed. He noted that HRA is predominantly driven by worries about the life science industry (trials) but some core ethical principles can and should transfer to the sort of research ethnographers do: safeguarding; high quality research; proportionality; and confidence that risks are managed. He talked about the tension between malfeasance (preventing evil) and non-feasance (stopping us doing good) and the challenges of balancing the two. He also argued that we need to show the rigour of ethnography which boils down to the questions Why can we trust you? and Is what we are asking/doing reasonable?

Kathy Rowan, Director of the NIHR Health and Social Care Delivery Research Programme, gave us a view of the funding landscape and noted that the NIHR supports ethnographic research. She was very aware of the issues presented by delays in ethics processes and flagged the need for preparatory work to reassure funders that sites were on board and ready for data collection in ethnographic studies.

We then heard from our Patients panel; Lynn Laidlaw from the Co-Production Collective highlighted how vulnerability is contextual and dynamic and argued that ethical process need to reflect that. She asked if we as researchers can make more time for conversations with patients about ethical issues. Lois Greenhalgh from the NIHR HSDR ED Wait PPI Group was concerned about exclusion of the vulnerable from research, she felt that this protectionist stance was not ethical and their voice and experience must be included. She noted that it can be difficult to have meaningful patients and public involvement  and to keep everyone involved but it can be done, and it can help shape understanding of the ethical issues involved in the research.  Rachel Garrard also from NIHR HSDR ED Wait PPI Group joined to tell us about her experience and views about being heard and the importance of inclusion. Beth McCleverty from Bliss (the UK’s leading charity for babies born premature or sick) described the complex environments of baby loss but noted that for the NIHR PRP PremPath study parents had wanted to be involved in the research. She also shared how the study’s parent panel had helped the researchers decide where to observe and Bliss had helped legitimise the importance of the ethnographic work for HRA and CAG.

The Symposium finished with a rich audience discussion which flagged that there had been huge improvements in processes but one size does not fit all. We were left with key questions such as:

• how do we negotiate a disconnect between procedural ethics and ethical practices which are more ongoing and based in the ‘doing’ of research (versus ‘getting ethical approval’);
• how do we reassure panels about trustworthiness;
• how do we balance patient involvement and PPI views with what we actually see as ethnographers (PPIE can be the outliers);
• how do we manage the incomprehensibility of ethics forms for patients?  

The following day a small group drawn from the symposium attendees convened (newly formed as The Ethics and Ethnography Observatory), to consider learning from the Symposium and practical solutions. We will continue progressing these over the next few months but anticipate these will include procedural amendments, as well as more general good practice guidance.

If you would like to receive further details about the work of The Ethics and Ethnography Observatory please contact Professor Catherine Pope : catherine.pope@phc.ox.ac.uk  or Professor Nici Mackintosh: nicola.mackintosh@leicester.ac.uk