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

Research Involvement and Engagement

Methodology

Cat Papastavrou Brooks¹  Eshika Kafle²  John Hammond²  Catherine L. Jenkins²  Anna Day²  Emily Elson²  Penny Herbert²  Zach Johnson²  Helen Startup²  Natali Butt²  Sarah Helen Keith-Roach²  Chloë Elsby-Pearson²  Natasha Stewart²  Dave Chawner³  Eirini Papasileka⁴  Nicola Gilbert⁵  Stella Reeves⁶ 

[1] Population Health Sciences, Bristol Medical School, University of Bristol, Canynge Hall, 39 Whatley Road, BS8 2PS, Bristol, UK;SPIRED Clinic, Research and Development Department, Sussex Partnership NHS Foundation Trust, Sussex Education Centre, Nevill Avenue, BN3 7HZ, Hove, UK;SPIRED Clinic, Research and Development Department, Sussex Partnership NHS Foundation Trust, Sussex Education Centre, Nevill Avenue, BN3 7HZ, Hove, UK;SPIRED Clinic, Research and Development Department, Sussex Partnership NHS Foundation Trust, Sussex Education Centre, Nevill Avenue, BN3 7HZ, Hove, UK;Comedy for Coping, Aesthetics Research Centre, University of Kent, Room 2.16, Jarman Building, CT2 7UG, Canterbury, Kent, UK;SPIRED Clinic, Research and Development Department, Sussex Partnership NHS Foundation Trust, Sussex Education Centre, Nevill Avenue, BN3 7HZ, Hove, UK;Department of Psychology, City, University of London, Northampton Square, EC1V 0HB, London, UK;SPIRED Clinic, Research and Development Department, Sussex Partnership NHS Foundation Trust, Sussex Education Centre, Nevill Avenue, BN3 7HZ, Hove, UK;Maudsley Learning, ORTUS Conferencing and Events Venue, 82-96 Grove Lane, SE5 8SN, London, UK;SPIRED Clinic, Research and Development Department, Sussex Partnership NHS Foundation Trust, Sussex Education Centre, Nevill Avenue, BN3 7HZ, Hove, UK;School of Human and Behavioural Sciences, Bangor University, LL57 2DG, Bangor, UK;

关键词: Co-production;    Lived experience;    Eating disorders;    PPI;    Research priority setting;    Service-user led research;    Anorexia nervosa;    Bulimia nervosa;   

DOI  :  10.1186/s40900-023-00460-3

 received in 2023-02-21, accepted in 2023-06-26,  发布年份 2023

来源: Springer

【 摘 要 】

BackgroundThere 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.MethodsThe 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.ResultsSix 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.ConclusionsWe 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.

【 授权许可】

CC BY   
© BioMed Central Ltd., part of Springer Nature 2023

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