As PPI Champion for the Fundamentals of Care theme within NIHR CLAHRC Wessex, I’ve a great experience and opportunity to be an equal member of a team developing the research priorities for this area of work. Crucially, these weren’t priorities that we developed together in a closed room, but rather they were co-produced at several stages.
When looking at other research priority setting work that had been done, we were struck how the ‘patient involvement’ was often limited to a choice of pre-determined items. We likened this process to having to choose from dishes on a menu, and wanted to make sure that in our work, we worked with carers and the public to design the “dishes” to go on the menu that matched their tastes and preferences, rather than just offering a choice from a list of research ideas received from health care professionals.
There is never a one-size fits all way of working with people with health conditions, their carers and the public, so we used a few different approaches.
So those conversations started. But they started with where people were – in two ways. Firstly, instead of requiring the self-selecting interested people to come to a workshop on our terms, we went out to Age UK lunch clubs and day care centres, as well as an Alzheimers support group coffee morning. Being able to have one to one informal conversations with people in an environment that they felt comfortable and relaxed in was important, and the opportunity to talk and hear from people who wouldn’t ever respond to a traditional approach, such as coming to a workshop.
Secondly, aware that priorities and fundamentals of care can be somewhat abstract concepts, we began the conversations by asking about their experiences and rooted the conversation in their stories, and what felt important to them.
This was done in tandem with an online survey to give opportunities to a range of different people, including those from seldom heard groups, across the geographical region of Wessex.
I was surprised, despite having done various bits of work with universities before, just how long it took! I’m very open that I am a rather impatient patient, and the pace of change and action within academia often frustrates me. Taking time to really think through a process and everything surrounding it is important, but it doesn’t get away from the fact that if we’d all just sat behind a closed door and decided the priorities ourselves, it would have taken less time. But we wouldn’t have such robust priorities or insight into the rationale and reasoning of each area – essential to appropriate implementation of research questions that are true to the contributors.
Trying to justify the time needs to be done along with justifying and perhaps quantifying the added value that I brought as a equal member of the team designing and delivering this project, and the value added by all the others who were involved as patients, carers or members of the public.
The practical implementation and use of these priorities was always at the forefront of my mind. At one point this presented a real conflict.
I often described the project as “making sure researchers research what is important to patients, carers, the public and staff, and not just what is of interest to them.”
I also knew that in order to research the chosen priorities adequately, it would have be subjects that the team of researchers already had some expertise in… Within the constraints of what was possible to deliver with the team, we still had to keep it open and transparent enough to be a genuine conversation.
As the conversations with patients, carers and members of the public progressed, one of the overriding priorities was that something happened, that this wasn’t just about generating a list to gather dust on a book shelf somewhere, so the priorities of the patients aligned overall with what the team could deliver, and still created additional insights.
With my fears around that allayed, I was still anxious about how the dialogue was maintained as following the prioritization, the research studies to address the priorities were put forward. As with everything, there were many other pressures and influencing factors that determine what gets researched – an eye-opening experience for me, and helping shed layers of my naivety!
There is a very fine line between research that is genuinely informed by the priorities, or are we retrospectively fitting the priorities to research that has always been of interest to the team. My role has been to tip the balance in favour of the former, and challenge times when the researchers lapse into their comfort zones, and simply extend the work they know best.
How can we communicate that commitment to the priorities in a research proposal? I feel really confident and proud of the work that we have done as a team to co-produce the priorities, but have realized that this is just the beginning (albeit the end of the beginning), as it doesn’t count until we’ve developed and undertaken the research to address the priorities, true to the spirit in which they were chosen.
Anya also works nationally as a patient leader and locally in Dorset as a self-management coach with the NHS.