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25 May 2023
Carmel McGrath is Research Fellow in Patient and Public Involvement (PPI) at ARC West. In this blog, she reflects on co-ordinating public involvement in the Personalised Primary Care for Patients with Multimorbidity (PP4M) study.
Patient and public involvement (PPI) in health research is an increasingly important concept. There are huge benefits when research is done in collaboration with the public rather than ‘to’, ‘for’ or ‘about’ them.
The PP4M study supports and evaluates a new template for annual reviews for people with multiple long-term conditions. The template allows people to have all their conditions reviewed at once, rather than having separate disease-specific reviews. Its aim is to focus on what matters most to patients.
ARC West’s role is to assess how GP surgeries make the template work for them. We also want to explore what patients and staff think of it.
This study is being conducted in collaboration with three Applied Research Collaborations, with sites in Bristol, Keele and Southampton.
In December 2022, I met with Chris Salisbury, the joint principal investigator for PP4M, to discuss public involvement activities on the study.
Before I became a Research Fellow, my PhD was on the impact of public involvement in health research. I also have a background in nursing, so I was keen to be involved in this study.
The team already had an invaluable co-produced document outlining the public contributors’ involvement throughout the research process. It also detailed how the team would ensure patients and the public were involved at all levels of the study, including the position of co-applicant filled by Simon Chilcott. Read about Simon’s reflections of being a PPI co-applicantReflections of a public co-applicant on a primary care study.
As coordinator, I developed and supported public involvement activities by:
Working with Simon Chilcott, the co-applicant on this study, taught me that developing such a role is an iterative process. I’ve spent the past year working with Simon and we have built a good working relationship. We can talk to each other openly about what’s working well and what isn’t.
Having an open mind and being flexible about the role of the co-applicant is important, as it’s likely to be slightly different for each study. Through discussions with Simon, we have reached a better understanding of what the role of the co-applicant is for the PP4M study.
I’m not directly involved in the project as a researcher, so it can be challenging to know the best time to seek input from Simon or other public contributors. Attending co-investigator meetings helps me keep track of study progress and identify opportunities for valuable PPI input However, there’s a potential disconnect between researchers and the PPI group between co-investigator meetings. Recognising this as an area for improvement, we are actively exploring ways to improve our practices and enhance collaboration between everyone involved.
I strongly recommend that you work in partnership with public contributors from the outset of your project, to discuss how you’d like to work together. From those discussions you could create an individualised live role descriptor that accommodates their needs and preferences and can be regularly updated as you continue working together.
For those looking for guidance on working with public contributors, look at Dr Victoria Wilson and Julie Clayton’s work. They work at the Centre for Academic Primary Care at the University of Bristol, and they created practical guidance on the roles and responsibilities of public contributors working on research projects based on the NIHR guidance.
We would like to thank our colleagues on the PP4M team who provided their support throughout this work. A special thanks goes to Dr Alice Moult and Dr Kate Lippiett and Dr Rachel Johnson for their insightful input to this blog. We also extend our thanks to Dr Victoria Wilson and Dr Julie Clayton for their contributions to this blog and their invaluable role in the development of the co-applicant practical guidance. Additionally, we would like to thank Dr Cindy Mann for her continuous support throughout this project and support with writing this blog.