Patients, service users, carers, researchers and healthcare professionals joined a half-day conference on 3 October, to discuss and learn about the opportunities and challenges of patient and public involvement (PPI) in applied health research.
The conference was hosted by King’s Improvement Science (KIS), funded by King’s Health Partners (KHP) and held at Coin St Neighbourhood Centre, London.
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,(Photo from left: Josephine Tapper, Zoë Lelliott, Mel Getty, Chris Pavlakis and Jane Stafford)
The event was co-designed, organised and carried out with the patient and public involvement members of King’s Improvement Science. Dr Jane Stafford, KIS programme manager and Josephine Tapper, public involvement member co-chaired the event.
Dr Jane Stafford, set the context for King’s improvement Science and explained that KIS was originally established to help KHP to deliver its mission of excellence in research, teaching and clinical practice with patient and public involvement central from the outset.
Josephine Tapper, who has been involved in KIS since 2016, referred to the KIS PPI principles: “One of the most important aspects of our PPI principles is about developing research that matters to people. Too frequently in PPI the priorities have already been set so they don’t always resonate with the public. One of the strengths of PPI at KIS is about being given the space to be critical friends. Inclusivity is also very important as our group includes people with a range of experiences of health conditions and backgrounds.”
Public involvement at KIS: panel discussion
The first panel discussed public involvement at KIS and included public involvement members Chris Pavlakis and Mel Getty, and Zoë Lelliott, director, King’s Improvement Science.
Mel Getty explained her involvement in KIS’s rapid review of remote consultations in mental health during the Covid lockdown. “We looked at how service users were managing with the rapid change. The projects that I’ve got involved in have always been things that I’ve experienced myself and feel passionate about. KIS provides training for people with lived experience, and you feel part of the team.”
Chris Pavlakis said: “We hold open conversations, and the research evolves, it doesn’t remain static. This helps us to understand better what matters most to people and communities. This way of working helps us to work on co-design and co-delivery and co-produce projects. We still face challenges but together we develop the skills to deal with the challenges we face.”
Value to healthcare of engaging with PPI work: panel
The second panel discussed the value to healthcare of engaging with patient and public involvement work and included Dr Rachna Chowla, GP and joint director of clinical strategy, King’s Health Partners, Anbhu K Balasubramanian, clinical research nurse at Guy’s and St Thomas’ NHS Foundation Trust and Dr Manuela Russo, research fellow, KIS.
“The value comes from new insights that we would never have had without involving PPI. For example, during Covid we were piloting the use of blood pressure testing at home and we had 70 monitors to give out but only a small number of people wanted to take them up and a local GP said let’s get Mabadiliko to do an insight study on why people are not taking them up. I didn’t realise that you could reach out to people to find out why they didn’t want to take up the monitors. This was groundbreaking to me and we went on to work with Mabadiliko on another study where we highlighted racism as a social determinant of health in a study on blood pressure.” Dr Rachna Chowla
Community perspectives on the power of PPI: panel
The final panel focused on community perspectives on the power of patient and public involvement and included Adam Kamenetzky, associate director of Mabadiliko CIC, and Savi Hensman, patient, service user, carer and public involvement coordinator at ARC South London.
A broader panel discussion was then opened to all attendees chaired by Zoë Lelliott, Director at KIS. The themes discussed were:
- The importance of trusting, long-standing relationships
- Differences within and between communities need to be considered, as well as differences of power and accessibility
- People are not ‘hard to reach’: we need to go to them and not expect people to engage with us on our terms
- Recognise the emotional labour of bringing your own personal experiences and the bravery required of PPI contributors
- Build trust with local groups and charities that represent communities
- Listen to people with lived experience and be willing to make changes
- Time constraints due to funding pressures and finding time for reflection.
Erin Letbe-Holder, patient and public involvement coordinator at KIS said: “This event was such a wonderful opportunity to work together with our PPI members on something which centres them and the fantastic work that they do. I think there is real value in looking at what PPI brings across a range of projects as its contributions are so varied and rich, but most of the time people will only see facets of what it brings because both research and health environments can be quite siloed.
We were able to open up the conversation to the wider community of people with an interest in PPI, and the response from them was emphatic – there is a real hunger to know more, to be involved more, and to work together in the future on the evolution of PPIE in order to really make best use of the knowledge and solutions generated by communities and the people in them.”
Attendees were asked to contribute to a WordCloud on the topic: What does PPI mean to you? View the Wordcloud
Read more about patient and public involvement at King’s Improvement Science
