EQUITy Patient and Public Involvement Blog
Patient and public involvement (PPI) was central to the design of the EQUITy programme. We worked closely with AnxietyUK to design the study and five IAPT service users reviewed and contributed to the development of our application and the plan for PPI within EQUITy. This was to ensure our methods, outputs and study information were sensitive to service users’ needs and priorities. In this blog, three PPI representatives from within the EQUITy team will tell you about how PPI is embedded in the day-to-day running and management of the study and what it’s like to be involved in EQUITy.
EQUITy Lived Experience Advisory Panel (LEAP) – Rebecca McNaughton
I joined the EQUITy Lived Experience Advisory Panel (LEAP) after seeing a Tweet from Dr Helen Brooks, PPI Lead for the study. It was great to see Twitter being used to recruit public contributors and I was excited at the opportunity to get involved with a study outside of my local area to which I can bring my clinical and lived experience. Sometimes and in some institutions, PPI has a reputation for being a closed shop, or open only to ‘the same old faces’. Helen’s use of Twitter ensured that this wasn’t the case for EQUITy.
The EQUITy LEAP first met in the spring of 2018. We were invited to attend a day-long meeting at which LEAP members met the research team and the scope and aims of the study were explained. There was enthusiastic discussion about the ways in which the LEAP could add value to the study and work began to develop the terms of reference for the group.
I have been a member of a couple of LEAPs previously and was impressed to see that all of the key academic members of the research team were present at the first LEAP meeting. Sometimes PPI appears to be a ‘bolt-on’ to a study and is delegated to one person within or external to a research team. In these cases, LEAP members may rarely get to talk with the PI or researchers with responsibility for carrying out, hands-on, the research.
Although the EQUITy LEAP meets only four times each year, we are sent monthly updates about the progress of the study as well as notifications of PPI opportunities – related to and outside of EQUITy. This ensures that LEAP members feel as involved as we can be. The Faculty of Biology, Medicine and Health at The University of Manchester (UoM) also issues a Public Engagement Digest which enables LEAP members to be aware of PPI openings and to access learning opportunities.
As the study has progressed, LEAP members have had opportunities to: attend a Faculty-based induction for UoM Public Contributors; comment on and suggest changes to interview schedules; attend training in qualitative analysis; contribute their interpretations of qualitative data and comment on others’ interpretations; co-develop an app associated with the study; attend a national conference to learn more about the methodological approach taken in EQUITy and to gain a better understanding of the ways in which psychological therapies are currently delivered; and review a grant application for future research (evolving from EQUITy).
The EQUITy LEAP is a supportive group where values including transparency and integrity are shared. These have been most obviously expressed in our commitment to sharing responsibility for the EQUITy PPI budget – its spending and review – and to our facilitation of an extraordinary meeting during which the LEAP’s terms of reference could be discussed and agreed – including the thorny issue of payment rates for participation. I have welcomed the willingness and co-operation of the research team in terms of both of these activities and look forward to an enjoyable, rewarding and learning experience as the study continues.
Researchers with lived experience of mental health difficulties – Charlotte Welsh
My role involves qualitatively analysing interview transcripts from both mental health professionals (Psychological Wellbeing Practitioners; PWPs) and Clients within Improving Access to Psychological Therapies (IAPT) Services. The qualitative analysis involves coding the interview transcripts line by line to explore PWP and Client views and beliefs about telephone therapy interventions. As Service User Researcher, my role is to be particularly mindful of the Client’s voice within the research. This involves being a part of two coding teams (PWP data and Client data), each made up of two other researchers, and attending coding meetings.
I attend a range of meetings, including team meetings with other researchers and also with people who have lived experience of mental health services and are part of the Lived Experience Advisory Panel (LEAP). The PWP and Client interviews are to help inform the development of a training programme for PWPs, which will specifically focus on developing skills related to delivering therapy over the telephone. Therefore, my role also involves researching existing training materials and resources in regard to telephone therapy, in order to further inform the EQUITy research project.
Public representation on the Trial Steering Committee – Joe Keaney
My interest in mental health issues is grounded in lived experience, some of it due to a demanding career in broadcasting. One of the last television projects I worked on was the BBC series Dragons’ Den where I interviewed all the contestants before and after their time in “the Den”. I was fascinated by the way people reacted to the disappointment of not obtaining the investment they were seeking – the attrition rate on the show is considerable – only 1 in 10 get investment. Why were some people more resilient than others? Could resilience be taught?
Once I retired in 2012, I became a mentor with Anxiety UK, based at the Zion Centre in Hulme, where I worked face to face and one to one with people presenting with anxiety and mild depression. It has been fascinating, life-affirming work and lead me onto the EQUIP project (2012-17) which sought to make patient priorities core to care planning.
The EQUITY project is important for me because as a mentor I have an experience based attachment to face to face dialogue and while I understand some of the sound reasons for telephone therapy (geographic isolation for example) I still need some convincing and this project will go some way to establishing an evidence-based case for the telephone approach.
I’ve attended two steering committees so far and been impressed at the rigour and timbre of the dialogue, whether that’s over the logistics of recruitment, the pace and purpose of app development, or the training of health professionals in the delivery of the therapy. What I love is the mix of the practical and the scholarly (not that the two should be seen in opposition, obviously…) It’s stimulating being part of a discussion with so many what ifs, mapping out the territory as we move along together and aware that flexible open-mindedness is key.
Look out for future blogs on study publications co-authored by our PPI representatives!
3rd April 2019