Co-producing principles to guide health research: an illustrative case study from an eating disorder research clinic

Journal article


Brooks, C., Kafle, E., Butt, N., Chawner, D., Day, A., Elsby-Pearson, C., Elson, E., Hammond, J., Herbert, P., Jenkins, C., Johnson, Z., Keith-Roach, S., Papasileka, E., Reeves, S., Stewart, N., Gilbert, N. and Startup, H. (2023). Co-producing principles to guide health research: an illustrative case study from an eating disorder research clinic. Research Involvement and Engagement. 9 (84). https://doi.org/10.1186/s40900-023-00460-3
AuthorsBrooks, C., Kafle, E., Butt, N., Chawner, D., Day, A., Elsby-Pearson, C., Elson, E., Hammond, J., Herbert, P., Jenkins, C., Johnson, Z., Keith-Roach, S., Papasileka, E., Reeves, S., Stewart, N., Gilbert, N. and Startup, H.
Abstract

There is significant value in co-produced health research, however power-imbalances within research teams can pose a barrier to people with lived experience of an illness determining the direction of research in that area. This is especially true in eating disorder research, where the inclusion of co-production approaches lags other research areas. Appealing to principles or values can serve to ground collaborative working. Despite this, there has not been any prior attempt to co-produce principles to guide the work of a research group and serve as a basis for developing future projects. The aim of this piece of work was to co-produce a set of principles to guide the conduct of research within our lived experience led research clinic, and to offer an illustrative case for the value of this as a novel co-production methodology. A lived experience panel were recruited to our eating disorder research group. Through an iterative series of workshops with the members of our research clinic (composed of a lived experience panel, clinicians, and researchers) we developed a set of principles which we agreed were important in ensuring both the direction of our research, and the way in which we wanted to work together. Six key principles were developed using this process. They were that research should aim to be: 1) real world—offering a clear and concrete benefit to people with eating disorders, 2) tailored—suitable for marginalised groups and people with atypical diagnoses, 3) hopeful—ensuring that hope for recovery was centred in treatment, 4) experiential—privileging the ‘voice’ of people with eating disorders, 5) broad—encompassing non-standard therapeutic treatments and 6) democratic—co-produced by people with lived experience of eating disorders. We reflect on some of the positives as well as limitations of the process, highlighting the importance of adequate funding for longer-term co-production approaches to be taken, and issues around ensuring representation of minority groups. We hope that other health research groups will see the value in co-producing principles to guide research in their own fields, and will adapt, develop, and refine this novel methodology.

KeywordsCo-production; Lived experience; Eating disorders; PPI; Research priority setting; Service-user led research; Anorexia nervosa; Bulimia nervosa
Year2023
JournalResearch Involvement and Engagement
Journal citation9 (84)
PublisherBMC
ISSN2056-7529
Digital Object Identifier (DOI)https://doi.org/10.1186/s40900-023-00460-3
Web address (URL)http://dx.doi.org/10.1186/s40900-023-00460-3
Publication dates
Online20 Sep 2023
Publication process dates
Accepted26 Jun 2023
Deposited04 Oct 2023
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Open
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