The following article details the development and provision of training for our Core Group PPIE members. Materials from this session can be made available to PPIE members from Epi Group studies as required / as appropriate.
Ensuring appropriate training for our patient partners is a foremost concern of the PPI coordination group. From the beginning we drew upon NIHR INVOLVE’s ‘Starting Out: Essential information for members of the public getting started in involvement in research’ for guidance, and ensuring adequate training for our patient partners is one of the fundamental issues raised in this document. During our first year of Core group meetings we addressed the issue of PPI training in a relatively informal manner, with different members of the Epidemiology Group kindly providing short talks about their studies, study methods and research issues in their talks. During this phase, we regularly checked in with the group to ask them what training would be useful in the hope we could identify common issues which we would have capacity to deliver.
“Since joining the PPI Core group, I have become involved with many other individuals from all walks of life and a variety of academic backgrounds”, said group member Diane Smith. “The need to fill in the gaps of knowledge continued to become apparent through our meetings, and needed to be addressed through appropriate training.”
It took a while to identify the group’s needs (although, as recounted by patient partners and researchers elsewhere, this isn’t unusual). The PPI Coordinating Team were also keen not to rush things and deliver training sessions which weren’t fit for purpose. We were aware that we had little training ourselves about patient partner involvement and what this may require, but equally, as the PPI Coordinators we were committed to trying to identify what was needed and figuring out how to deliver it! By the end of our first year we felt we had collected a significant amount of feedback which highlighted a number of key areas where members of the group felt training would improve their patient partner involvement. For example, comments such as ‘I am very ignorant of many of the illnesses that are discussed during the calls’ or ‘I would like to understand more about the research side of things’ were common, and gave us a great steer on how we might shape a more formal training programme.
Using this information, we were able to secure funding from the University’s Public Engagement and Research Unit (PERU) to develop a bespoke PPI training programme, delivered in-house by our clinical and academic colleagues, as well as one of our key patient partners. The programme consisted of a series of monthly seminars and Q&A sessions covering a broad range of topics from research skills and design, information about our group’s specialist clinical knowledge, practical skills such as how to review documents, and advice and support from more experienced patient research partners. Topics included:
- An overview of common musculoskeletal condition
- An introduction to the epidemiology
- A guide to research methods (quantitative and qualitative)
- The opportunities and challenges of being a PPI partner
- Reading and reviewing documents
- Overcoming impostor syndrome in research work
Sessions ran from January to July 2023, and our group reported overwhelmingly positive feedback to our first run of training sessions.
Group member Tracey Snell commented, "One of my favourite sessions was 'An Overview of MSK Conditions', where we heard about common and rare diseases such as rheumatoid arthritis, osteoarthritis, lupus and vasculitis. As a patient we often have limited medical knowledge of our own health conditions, never mind an understanding of diseases we haven't experienced. While we tend to be drawn to PPI work focused around our own particular diagnosis, that is not always the case, and so having a broader awareness of different disease types is hugely beneficial."
"Most PPI training I've done has been task-related such as how to review funding applications and study applications. The Epi PPI team, in consultation with group members, took a comprehensive look at what is involved in PPI work and came up with a set of seminars and Q&A sessions to meet a range of training needs."
Looking ahead, we hope that this programme has laid a solid foundation for successful engagement with our Core group moving forwards, and to any others who join in the months and years to come. Indeed, as coordinators we have also learned a wealth of information from these sessions, and the series has helped create a greater cohesion amongst patient partners, coordinators and academics working across our research.
“These sessions have given the group an opportunity to have greater understanding of the various types of research that are conducted and what they actually mean”, said Diane. “This has enabled us to have an understanding that makes reading research papers an easier task to allow effective feedback within the group.”
“I have found that the sessions have refreshed my understanding of research and I have learned more than I already had knowledge of”, added Diane. “I also found the sessions have created a better group dynamic of understanding and feel this has benefited everyone and their confidence to speak up and share more within the group meeting. The session on imposter syndrome was for me the most significant as the reactions from every single person in the group (including academic staff) clearly showed we had a commonality in feeling this syndrome in our lives.”
We are already thinking of ways to extend the series beyond this initial run, in tandem with ongoing feedback from our partners, and will continue to work with our group to identify areas of need based both on prior sessions as well as emerging issues as our group’s work progresses, and exploring ways in which we might bring some of the lessons learned from these sessions to our wider PPI pool.