Like all shifts, it wasn’t an overnight change, but gradual and perhaps clearest to see on reflection. When I first started getting involved with patient and public involvement (and patient leadership), many conversations felt like persuading researchers ‘why’ they needed to involve and engage patients and the public in their work. In recent years, most conversations have moved on and are more often initiated by researchers asking about the ‘how’, and it’s the ‘how’ to make PPI meaningful, impactful and effective that I want to explore with OTs in this chat!
After being asked by Jenny to host this chat, and saying a very enthusiastic yes, the next obvious thing to do was to talk with people who live with health conditions and are involved in research about what questions they feel are important to pose… Although I have plenty of experience as a patient and patient leader, none of which are invalidated by being an OT student, it felt important get other perspectives, and practice what I preach!
So in conversations with Tina Coldham (@TinaColdham), Carol Liddle (@LiddleCarole) and Natasha Liddle (@NatashaGarswood), we talked about the range of positive and challenging experiences we’ve had as patients involved in research, including making it meaningful, appealing and being respectful to those we are ‘engaging’.
Many of our experiences and perspectives are summed in this letter (hyperlink to https://onlinelibrary.wiley.com/doi/10.1111/hex.13087) by e-patient Sara Rigarre (@SaraRiggare) and colleagues very recently published in the journal Health Expectations, in response to a paper on PPI in research studies, in terms of PPI as an approach underpinned by person-centred values rather than isolated actions within a research project.
And these are the questions that we’d like to use to stimulate some healthy debate on Tuesday 7th July!
- How can we engage and use PPI in our research as OTs?
- How can we make the language and activities of PPI in research more relevant to the person on the street?
- How can you bring the national standards for PPI to life, to make PPI in your research meaningful throughout the research process?
- What transferable skills do we have as OTs that lend themselves to supporting PPI?
Just in case you need a reminder about the ‘why’, here are some of the key references regarding PPI in research for OTs. It’s a core part of the higher levels of the Evidence, Research and Development Pillar in the RCOT Career Development Framework:
“Facilitate the involvement of service users, staff and/or students to co-design and co-produce aspects of research and/or service development with more experienced colleagues.” (RCOT, 2017, pg. 44)
The first of 10 key principles underpinning the RCOT Research and Development Strategy 2019-2024 is:
“The individuals, groups and communities that we work with are at the core of occupational therapy practice, and the effectiveness and efficiency of service delivery are at the core of this R&D Strategy. RCOT expects people who access occupational therapy services not only to benefit from the evidence base underpinning practice, but also to play an active role in shaping research to develop new knowledge in line with national standards for public involvement in research.” (RCOT, 2019, pg. 9)
Indeed, the RCOT are already working with service users, patients and clients as key stakeholders in setting the research agenda for occupational therapy via their Priority Setting Partnership with the James Lind Alliance.
Within healthcare research more generally, the NIHR have collaborated with many stakeholders to develop the UK Standards for Pubic Involvement in Research, which are a great place to start to think how to embed these principles across all aspects of health and care research.
Anya de Iongh (@anyadei) is a first year pre-registration OT MSc student at UEA. Having been diagnosed with a number of health conditions in her early twenties, she got heavily involved in research as a patient leader, inspired by a gang of emerging patient leaders (see The Patient Revolution by David Gilbert, 2019, to get inspired yourself!) and having met OT and PPI research guru, Claire Ballinger. Her roles within the world of research have included working on research projects around nursing staffing with Wessex CLAHRC and online patient feedback with a team at Oxford University, as a PPI representative reviewing funding bids as part of a regional NIHR panel, and as Patient Editor at the British Medical Journal.
Gilbert, D. (2019) The Patient Revolution: How We Can Heal The Healthcare System, Jessica Kingsley Publishers
RCOT (2017) The Career Development Framework: Guiding Principles for Occupational Therapy. Available at: https://www.rcot.co.uk/sites/default/files/CAREER_FRAMEWORK.pdf
(Accessed: 18 June 2020)
RCOT (2019) Royal College of Occupational Therapists’ Research and Development Strategy 2019-2024. Available at: https://www.rcot.co.uk/practice-resources/rcot-publications/royal-college-occupational-therapists-research-and-development-strategy-20192024 (Accessed: 18 June 2020)
RCOT (2020) Setting the research agenda for occupational therapy, Available at: https://www.rcot.co.uk/setting-research-agenda-occupational-therapy (Accessed: 18 June 2020)
NIHR (2019) UK Standards for Public Involvement in Research. Available at: https://drive.google.com/file/d/1U-IJNJCfFepaAOruEhzz1TdLvAcHTt2Q/view (Accessed: 18 June 2020)