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25 May 2023
In this blog, Simon Chilcott talks about being a public co-applicant in the Personalised Primary Care for Patients with Multimorbidity (PP4M) study.
Since childhood I have lived with several health conditions and had frequent interactions with primary and secondary care health services. However, my interest in health research really began in 2010, when a counsellor suggested doing some voluntary work in the field.
I was drawn to a request for PPI members from the University of Bristol. I was invited to join the 3D study, a three-year project to provide a person-centred intervention for people with multiple health conditions.
As the 3D study ended the team recognised that the PPI element had been very successful. An academic paper reflecting the influence, effectiveness, and personal experiences of the patient group was published in 2018. I wanted to continue working in health research so I followed-up on PPI opportunities as they arose.
I became involved in a range of projects, including some looking to benefit people with multiple long-term conditions. I was able to share my lived experiences (and frustrations) within these groups and make a positive contribution to the quality of the research. This also enabled some close working relationships with researchers with similar interests.
I was asked if I would like to be a public contributor and a co-applicant on the PP4M study at a very early stage of the project. The researchers recognised that strong PPI was required and having a public contributor embedded within the study team at an early stage would be an advantage.
Being involved at the conception of the PP4M study was very exciting. I was involved in some of the very early discussions, when research ideas were not fully developed and there were opportunities to shape the design and consider how the project may benefit the largest number of people. As the ideas developed, further thought was given to how the research could be introduced and supported by care providers, funders and researchers from other academic centres.
I found “working around a table” and developing ideas very exciting, interesting and insightful. However, after the scope of the project had been decided, I found that my involvement became more remote and sporadic, particularly during the protocol development and funding application phase. This was in part due to COVID-19 restrictions, coinciding with a rapid increase in the number of people, work streams and geographic locations involved.
Once the conceptual phase was complete and the project moved towards implementation, it became clear that the co-applicant role wasn’t fully understood. I felt the project struggled to best use my skills. There was no role description or a plan for my time commitment.
During this period, I found it difficult to identify what was required from me or how I could make the most valuable contribution. However, I had a good relationship with the researchers and was able to express my concerns about the lack of clarity with the co-applicant role.
It is hard to come up with one piece of advice for someone interested in becoming a co-applicant, but I think any advice should centre around taking the time to build strong relationships. The higher-level processes of conducting academic research will be completely new to most public co-applicants and therefore it will take time for them to settle.
Researchers need to discover the skills and experience a public contributor can bring to their work and look for ways of incorporating them. Of course, to get the most from the experience, the public contributor needs to seize opportunities as they arise and be open to learning new skills. When a good working relationship is established, I believe there are huge benefits for all involved.
Public involvement in health research is crucial for ensuring that research is well designed, accessible and relevant. Public co-applicants play a vital role in this process by bringing a unique perspective and helping to ensure research is patient-centred.
Our experiences with the PP4M study have highlighted the challenges and rewards of being a public co-applicant. We hope that our reflections and advice will be helpful to other public co-applicants and researchers involved in health research. Read Carmel McGrath’s reflections on co-ordinating public involvement for the study.
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.
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.