Author:
,Allen Dawn,Cree Lindsey,Dawson Paul,El Naggar Shaimma,Gibbons Bliss,Gibson John,Gill Laura,Gwernan-Jones Ruth,Hobson-Merrett Charley,Jones Beverly,Khan Hameed,McCabe Catherine,Mancini Mary,McLellan Dougie,Nettle Mary,Pinfold Vanessa,Rawcliffe Tim,Sanders Angela,Sayers Ruth,Smith Deb,Wright Diane
Abstract
Abstract
Background
Patient and Public Involvement (PPI) in research is a growing field of work, incorporating experiential knowledge within research processes. Co-production is a more recent PPI approach that emphasises the importance of power-sharing to promote inclusive research practices, valuing and respecting knowledge from different sources, and relationship building. Applying co-production principles in research trials can be difficult, and there are few detailed worked examples or toolkits. This paper explores the successes and challenges encountered by one research team.
Methods
Our paper is written by a team of 21 people working on PARTNERS2, led by a smaller co-ordinating group. Using a co-operative style inquiry, the authors have reflected on and written about their experiences; analysis of the resulting 15 accounts provided examples of how PPI and co-production were delivered in practice.
Results
We reveal varied and complicated experiences as we developed our collaborative approach across the entire research programme. Four main themes emerge from reflective accounts which describe aspects of this process: (1) recognising the importance of ‘emotional work’; (2) developing safe spaces to create and share knowledge; (3) some challenges of using our personal identities in research work; and (4) acknowledging power-sharing within the research hierarchy. We also found continual relationship building, how different forms of expertise were valued, and stigma were central to shaping what work was possible together. Other important practices were transparency, particularly over decision making, and clear communication.
Conclusions
Our work provides one example of the ‘messy’ nature of collaborative research in practice. The learning we surface was contextual, generated within a large-scale research programme, but applicable to other studies. We found for success there needs to be an acknowledgement of the importance of emotional work, creating safe spaces to co-produce, transparency in decision making and reflection on the difficulties of using personal identities in research work including for service user researchers. These elements are more important than existing guidelines suggest. Implementation of actions to support emotional work, will require changes within individual teams as well as institutions. Introducing reflective practice in teams may be helpful in identifying further improvements to inclusive research practice.
Funder
Programme Grants for Applied Research
Publisher
Springer Science and Business Media LLC
Subject
General Health Professions,Health (social science)
Reference34 articles.
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2. Canadian Institute of Health Reserch. Strategy for patient Oreintated research: putting patients first; 2014. https://cihr-irsc.gc.ca/e/documents/spor_framework-en.pdf (Accessed 21 Feb 2020).
3. Medical Research Council. Strategy for lifelong mental health research. London: MRC; 2017.
4. Department of Health. A framework for mental health research. London: HMSO; 2017.
5. INVOLVE. Going the extra mile: improving the nation's health and well-being through public involvement in research. Eastleigh: INVOLVE; 2016.
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