In this blog, Louise Ting and Charlotte Archer share their reflections on working together as a public co-applicant and principal investigator on a research study looking at the benefits and challenges of remote consulting for anxiety and depression in primary care. A public co-applicant is an individual with lived experience of the condition being researched who is involved in the development of a research funding application. If the research is funded, they also have some responsibility as part of the team for the management and/or delivery of the study.
The study that Louise and Charlotte delivered together involved interviewing 21 patients and 20 practitioners (GPs, nurses, pharmacists) from GP practices in Bristol and the surrounding area. The aim was to understand when alternative platforms for consultations, such as telephone calls, are acceptable, effective and preferable to in-person appointments for people seeking support with anxiety and depression. You can read about the research in more detail in the journal BMJ Open.
How did your collaboration come about?
Louise: I first met Charlotte when she was doing research on anxiety for her PhD. I was a part of her Patient and Public Involvement (PPI) advisory group and found the topic really interesting. I’ve struggled with a number of anxiety disorders throughout my life so had a lot to contribute in terms of my lived experience. I’m also passionate about meaningful public involvement in research, so I was really pleased when there was an opportunity to get involved with one of Charlotte’s studies as a public co-applicant. When considering taking on the role, it helped that we’d worked together before. Whilst I knew I had relevant skills and experience, it was still a new area to me in some ways and my anxiety can be a barrier. Having a pre-existing relationship meant the trust was there and I felt I would be genuinely included and valued for my contributions.
Charlotte: Before this project, I’d only had a small amount of experience working with a few public contributors for my PhD research. Louise was one of those contributors, and when I started developing my ideas for this project, I knew that Louise would be able to bring a great depth of insight to the research. As this was my first time involving a public co-applicant from project conception through to dissemination of the findings, I think it really helped that Louise brought so much experience to the research team in terms of her previous involvement with research studies and her own lived experience. This meant that we could learn from each other!
How involved were public contributors in the study?
Louise: I was involved in all stages of the study as a public co-applicant. My role meant that I had greater responsibility for the management of the study, so I was more involved than the other public contributors although we all played a part in the successful delivery of the research. I was therefore in touch with Charlotte quite regularly and we had a few meetings with other members of the core team to discuss the study as it progressed. These meetings included analysing the qualitative data and interpreting the findings, as well as writing up the results for publication.
Charlotte: Alongside Louise’s key role, there were also a further six public contributors involved in the research. They attended meetings to develop the study materials (such as the invitations) and to discuss the interpretation of the interview findings. One of the main changes that came about from the public contributor discussions was a change to the study title on the patient invitations (from “remote consultations” to “alternative platforms for appointments”), to hopefully make the focus of the research clearer for potential participants. Louise and I also co-facilitated the meeting with the other public contributors to talk about the findings. We received lots of positive feedback about our joint approach, which was brilliant to hear.
What did you enjoy most about your collaboration?
Louise: It was the first time I’ve been involved as a public co-applicant and I found it really exciting to have input at that level. I was trying something new, in public involvement which I’m passionate about, with someone that I enjoyed working with. In addition to this, my disabilities often mean I miss out on things or struggle to contribute. However, on this project, I felt useful, valued and included.
Charlotte: I really enjoyed being able to develop a working partnership with Louise, who always brought a fresh perspective. She helped to ground research team discussions in the patient experience, which had such a positive impact on the study. Working with Louise as a public co-applicant has also helped build my own skills in co-production, which is valuable in my development as an early career researcher. I’ve particularly enjoyed hearing about Louise’s own research ideas, and it’s brilliant to know that this project has inspired her to pursue them.
What worked well?
Louise: I felt supported and could see how my input was having a direct impact on the study. We had a relationship prior to working on this research together, which helped me feel more at ease. This meant I was comfortable enough to express myself authentically, which isn’t always easy when you come from a marginalised background. Having choice and flexibility around my involvement mattered a lot too, including doing things at a pace which worked for my health issues. I loved that Charlotte was very open to both my contributions in general and to what I wanted to get out of being a co-applicant personally.
Charlotte: As Louise mentioned, having known each other before this project really helped as I knew how committed she would be to the project. On a more practical note, having a pre-agreed workplan with tasks and anticipated deadlines definitely helped the collaboration run smoothly. We kept the workplan regularly updated, meaning we could factor in any unexpected delays and revise future activities where necessary.
Did you encounter any challenges?
Louise: There are often institutional barriers when it comes to public involvement in research – payment, accessing shared folders, setting up a university account. This was no different! There were also times when I felt a bit distant from the rest of the team but I think this was due to the nature of remote working and not being embedded within the university like researchers often are. I think it can be very easy for people to be involved tokenistically as public co-applicants too, but this didn’t happen with our study.
Charlotte: I definitely underestimated the time it takes and the associated cost of doing public involvement well. As the study progressed, it was clear the value that lived experience brought to the study. Therefore, we ended up involving Louise more than was originally planned for. With the funder’s permission, we were able to repurpose some funds to increase the PPI budget. Going forward, in future funding applications, I will be ensuring I have a sufficient budget for meaningful public involvement at both advisory group and co-applicant levels.
I think I also found it difficult to know how much information to share with Louise about the day-to-day running of the study, not wanting to overwhelm her with too much detail, but also wanting her to be as informed as the rest of the research team. In hindsight, I think I should have talked with Louise about this early on to establish how much information should be shared.
What are your top tips for others who want to involve public co-applicants?
Louise and Charlotte:
- Cost your research grant carefully to ensure you have sufficient budget to support meaningful and inclusive involvement of public co applicants
- Approach people that you already have a relationship with when considering potential public co-applicants, and as early on in the research idea development and grant writing process as possible
- Identify what a public co-applicant is most interested in and what support they might need to meaningfully contribute
- Make a workplan together so there is a clear understanding of the public co-applicant’s role and expectations on both sides and to ensure the collaboration is mutually beneficial
- Communication is key! Check in regularly to see how you are both finding the process
- Be flexible with timings and deadlines wherever possible to accommodate individual needs
Further reading
You can read guidance on involving the public as co-applicants on the National Institute for Health and Care Research (NIHR) Learning for Involvement website.
Acknowledgments
We are grateful to the patients and practitioners who gave their time to be interviewed for the research and to the public contributors who gave their time and valuable insights to inform the research. We would also like to thank our co-investigators, Professors Katrina Turner, David Kessler and Nicola Wiles, for their collaboration on the project, and Alisha Newman and Dr Victoria Wilson for supporting the public involvement aspects of the research.
This study was funded by the National Institute for Health and Care Research (NIHR) School for Primary Care Research (project reference 598). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.