‘Inspiring Stories’ with Adam Geraghty
Associate Professor of Psychology and Behavioural Medicine
This is part of the Engaged Medicine ‘Inspiring Stories’ blog series. The blogs explore the stories behind outreach and patient-public engagement activities of staff and students from the University of Southampton’s Faculty of Medicine.
Novel Patient & Public Involvement and Engagement (PPIE) November 2021– Developing an inclusive approach to multidimensional measurement of mental health symptoms in people in UK primary care.
As part of a NIHR programme development grant application, we wanted to try some new methods for diverse patient and public involvement (PPI) input on what we had planned to do. We had an excellent lay PPI co-applicant, so this was in addition to, rather than instead of the more standard approach.
The project specifically is about exploring a new approach to conceptualising mental health symptoms in primary care; seeing whether it is helpful to think of distress/stress as related to but distinct from depression and anxiety. As these are all experiences many of us have, we knew we might be able to try a broad approach, rather than specifically targeting one clinical group. I contacted Sonia Newman, Patient & Public Involvement and Engagement Officer in the Primary Care Research Centre, who leads the ‘Finding Out Together’ team. The team have been developing relationships with staff and families attending a Sure Start centre in Southampton. Sure Start is an organisation that supports young families with a range of issues relating to living well. Those who use and interact with Sure Start often have different backgrounds to those we usually work with in PPI roles.
As we didn’t have much time (the deadline for the grant was very short), we decided to work with social media, Facebook in particular. We developed a lay summary of the study and some free text questions about the project and the summary that followed it. This was all done on Microsoft Forms. We then created a brief but catching video that linked to the summary and questions, and then posted it on the Sure Start Southampton Facebook page. We were unsure how many people might provide feedback, but I think we would have been happy if 2-3 people had answered our questions. In fact, we had 12 very useful responses about the lay summary and the project in general.
Broadly, the respondents were positive about the idea, agreeing that it would be useful to look at the ‘bigger picture’ and consider a range of responses in different areas of mental health. One respondent stressed the importance of asking people directly how they would describe their own symptoms in terms of stress, depression or anxiety. This is important and we will incorporate this into our qualitative work. Some respondents highlighted the importance of testing the approach, and we plan to do this in our future programme in a randomised controlled trial. Others were clear that they felt the current system in primary care, regarding diagnosis and symptoms was not currently working, hence being supportive of our proposed research. To thank those that were involved, I created a brief video sharing the aims and thanking them again and uploaded it to the Facebook page.
We were really pleased with the response rate and the useful comments that people provided. This has certainly proved an important and useful addition to having core PPI co-applicants. It was very helpful to have a diverse range of responses and input, in a fairly short period of time. We wanted to create a summary of the study that was interesting and easy to read, similar to lay summaries in grant applications, but going further in that it could be read quickly and understood by anybody, no matter what their background. As an academic, used to writing in quite a dense and ‘academic’ way, this was difficult. We worked on it together and our PPI co-applicant gave useful feedback for where and how it could be improved. Additionally, I have never taken a video of myself for Facebook before. I found that quite hard; it took multiple takes!
I really enjoyed the prospect of being able to reach out beyond the very useful and more common PPI structures that we often work within, to have feedback from a range of people with different experiences. Working with social media and thinking of new ways to do things was enjoyable. My experience of working with different routes to engage with people was really positive. In addition to core, lay PPI members on the team, I now think that reaching out in a range of ways to diverse communities is critical. It will help to ensure the research we do is most likely to have benefit for a broad range of our society.
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