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Background Patient or user involvement in health research is a well-established principle. However, involvement is often limited to advising on research questions and design, leaving researchers to complete data collection and analysis. Involvement in data analysis is one of the most challenging, least well-explored aspects of involvement. Qualitative interview data forms high volumes of rich, complex material which can be daunting to work with. Analysing narrative interviews with patients is central to a patient-centred quality improvement method called experience-based co-design. The analysis identifies ‘touchpoints’ –key moments of healthcare experiences – and leads to the production of a ‘trigger film’ to spark codesign discussions between patients and staff. We wanted to see what user involvement in this analysis would bring, and how best to achieve it. Methods As part of a wider secondary analysis study to create new trigger films, we re-analysed interview transcripts on experiences of young people with depression and experiences of stroke. We then ran two workshops with people with relevant lived experience, working with extracts from the same materials after brief training. Results People involved in the workshops identified similar themes to the researcher, but also brought some new insights. While they engaged easily with the materials selected, we under-estimated how much time it would take people to work through these. Discussion and sharing experiences and perspectives were highly valued in the first workshop. In the second workshop, we therefore started with group discussion, based on people’s own experience, of what they thought the touchpoints would be, and later viewed a draft trigger film together to see how it compared. Conclusions Those involved felt that while analysing transcripts was possible in small quantities, it was not best use of their time. We suggest that conversation, rather than data, is at the heart of user involvement in analysis. One way to retain the value of lived experience in the analytic process, without over-burdening people with data, is to elicit user reflections on their experience at the start of analysis, and use this as a guide to direct both researcher and service user attention during the remainder of the process.
Locock, L., Kirkpatrick, S., Brading, L., Sturmey, G., Cornwell, J., Churchill, N., & Robert, G. (2019). Involving service users in the qualitative analysis of patient narratives to support healthcare quality improvement. Research Involvement and Engagement, 5(1). https://doi.org/10.1186/s40900-018-0133-z