What do you think about medical research? Are we focusing in the right area? Do our findings make sense? Will they make a difference?
Since 2009 a determined public group has been working with clinicians and academics to answer these questions and help maximise the benefits of health research. The Peninsula Patient and Public Involvement Group, or PenPIG for short, consists of a diverse group of individuals from across the South West, many of whom have lived experience of long-term medical conditions, and who share an interest in improving both the visibility and impact of medical research.
The group meet regularly to discuss proposals, help disseminate findings, and coordinate user involvement. By placing patients at the centre of its research, PenCLAHRC is hoping to boost the relevance and application of its findings. Kate Boddy, Research Fellow at PenCLAHRC, works closely with PenPIG and believes the group’s input is vital to ensure research has relevance to the end-user:
“Patients and members of the public provide a different way of looking at things that can ground our studies with practical experience. By listening to people who live with the conditions we’re studying, we can ensure those who are meant to benefit have a say in shaping the research agenda.”
The advantages of this approach are embodied by a recent research proposal PenPIG successfully worked on. The inter-arm blood pressure difference individual patient data collaboration, or INTERPRESS project, is examining the differences in blood pressure some people can experience between arms.
By combining information from several studies to create one large dataset, INTERPRESS will assess the health implications for people with a high blood pressure difference and attempt to establish a ‘safe’ level. The study relies on complicated statistical techniques which can be difficult to describe, so PenPIG were called upon to help explain the process to a general audience and explore the different ways in which the project’s findings might be disseminated.
Nigel Reed, a PenPIG member who worked on the proposal, says the process was a familiar one:
“Like a lot of the research we see, the science was explained really well. What was lacking was a clear explanation of how patients might benefit. After some initial training on systematic reviews, we worked together to score the bid just as NIHR might. Following our discussion, feedback and revisions we felt the research was much clearer and stronger, and a great project to go forward.”
INTERPRESS was subsequently funded and Dr Chris Clark, the clinician leading the study, believes PenPIG’s involvement was crucial to its success:
“This was a new experience for me and I have no doubt that without PenPIG’s help we wouldn’t have secured funding for this project. The team were able to take the research proposal and illuminate it in a totally different way. We now have patient involvement right through the project, from inception to dissemination and publication.”
The team are keen to hear from any health researchers across the South West who might benefit from their input. You can learn more about PenPIG and PenCLAHRC’s patient and public involvement programme here http://bit.ly/1MzmDkR.
The INTERPRESS project is funded by the National Institute for Health Research (NIHR) Research for Patient Benefit (RfPB) programme. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.