As January drew to a close our Patient and Public Involvement (PPI) team were in celebratory mood as they, together with PenARC’s Patient Involvement Group (PenPIG), invited patients, carers, members of the public and researchers to come together to look back over ten years of working together and to talk about their hopes for involvement as PenARC begins a new, five year research cycle.
Before attendees could pin a wish on the Tree of Involvement, help to build a Lego Ark from the colourful pile of bricks, make a badge to wear to conferences or add a connection to the Networking Map, there was the opportunity to hear three of the academic researchers integral to the team’s formation answer audience questions. Chris, a long-standing member of PenPIG, was tasked with putting the audience’s questions to the panel.
Asked for reflections on a PPI event that had stayed with her, Professor Nicky Britten spoke about a collaborative polypharmacy project between universities in the west of England in which she and members of PenPIG had been involved. The members had attended research meetings, she said, helping to formulate the research questions by contributing to discussions about what was important to consider and prioritise. ‘It was lovely to see colleagues, who might have been thinking, “Oh, we’ve got to do public involvement”, listening to what you had to say and learning from it. I was so proud,’ she told the audience.
Professor Stuart Logan spoke about his pride too, when, attending an international conference around health and disability in Amsterdam he’d realized that, ‘this group of parents who were with us were working at a so much more sophisticated way than anyone else in the world. They were making sure we did the right stuff, the right way and were focusing on what really mattered.’ As a result the international research community looked to PenARC to learn how to practice PPI effectively. ‘It was an overwhelming experience to see a big international audience recognising what we were doing’, he said.
When the panel were asked how they thought PenPIG had developed Professor Katrina Wyatt said, ‘One of the things that has always struck me, and one of the key things I try to pass on, is the way PenPIG models how we should do meaningful involvement. From the very beginning PenPIG were involved in making decisions, in supporting people to be involved; it was a partnership. PPI isn’t an add on, it’s how we do research’.
The panel talked about how they had identified the essential nature of public and patient involvement in research early on and of allocating resources to facilitate the development of a dedicated team. ‘We have a whole team, who are fabulous,’ says Professor Logan, but if you don’t put the money in, it doesn’t happen!’ The PPI team, made up of Dr Kristin Liabo, Dr Emma Cockroft, Kate Boddy, Tanya Hynd and Ciara Thomas and led by Professor Nicky Britten, supports PenARC researchers and students to involve the public in their research projects as well as publishing research on how best to involve members of the public in health policy, research and practice. The team initiated the patient involvement group PenPIG and work with a variety of groups and individuals.
Members of the audience shared their reflections on what being involved in research meant to them. One audience member said, ‘I came to PenPIG because I was interested in children’s health. I attended a meeting in London to go over the clinical commissioning guidelines for the NHS and made a comment. A midwife stood up and said, ‘She’s the reason we do the research. It was good to be listened to’. Another member said, ‘I feel I’ve learned a lot of skills by doing PenPIG and PPI; it’s really helped me; it’s built my confidence and self-esteem. I feel much better. I’ve made good friends and I feel I’m repaying the debt I owe to the NHS by contributing to research’.
When asked what stood out for him as a lesson to learn from the last ten years of PPI, Professor Logan said, ‘The lesson for me is that, if you have meaningful involvement of people at the sharp end of stuff, you’ll end up doing research on questions that have never, ever occurred to you. We’ve seen really big impacts on stroke research and the research PenCRU do around the health of parents with children with serious disabilities. This is where our energy needs to be, around this stuff that really matters.’
‘We go to the most obscure places around the world,’ he went on, ‘and people say they’ve heard about the way we do this stuff. You can’t ask for better than that, can you?’
Find out more about the PPI team and their work here