Anonymity in Participatory Research: Is It Attainable? Is It Desirable?

Abstract

Patient perspectives in multi-disciplinary study teams can add to the relevance, quality, and application of research. In the United Kingdom, ethics committees tend to distinguish patient and citizen involvement from research participation. This means that when researchers ask patients or citizens for advice on a study, or invite them to collaborate with the study team, they do not need ethical approval. This puts their input on a similar footing to clinicians, other practitioners, academics, and policy makers. But there are times when people’s input into study design and implementation derives from their participation as research “subjects.” This is more likely to be common in qualitative research, where a researcher’s interaction with participants may result in collaboration on data collection and analysis. Drawing on a study with young people leaving foster and residential care, this case study describes what we did when a research participant wanted to be acknowledged by name. This request challenged the principle of anonymity which ethics committees and researchers commonly expect to be afforded to, and welcomed by, participants. We declined the request on two grounds. First, the commitments we had made in our application for ethics approval and second, our concern that naming one participant might breach the confidentiality of those who preferred to remain anonymous. Here, we ask whether it is possible to conduct fully anonymised participatory research and suggest that involvement of patients and citizens as research advisors carries challenges to established conventions.

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