Abstract
Although patient and public involvement (PPI) in increasingly a buzz term in research, much of our experience tells us PPI can sometimes be a ticking-box exercise, instead of adding true value to research. We mean to share our PPI work in our project, to get colleagues to consider applying some of our PPI activities in their own ongoing and future research and service evaluations.
This is a poster summarising patient and public involvement and engagement at three stages: before, during and after a project. The poster is directed at people leading and delivering research, and at patient and public contributors that may need guidance in fulfilling their role as PPI contributors.
Our research project entitled “Integrate-HD” involves two different patient and public groups. One recruited specifically for the Integrate-HD project, prior to funding being secured for the project, working on the proposal from inception - this group purposefully recruited lay contributors. And another PPI group, HD Voice, managed by the Huntington’s Disease Association (HDA) England & Wales - this group characterised by more experienced contributors. Integrate-HD has a person appointed as the PPI lead, that guides the research team in their interaction with the PPI groups, in organizing different PPI activities and contributes as a person with lived experience of long term neurological conditions, to the project.
Our poster will explain the different ways we involved patient and public contributors, the value PPI added to our specific research project, and some practical considerations to have in mind when doing PPI in research.
The poster will spur discussion amongst the audience in relation to PPI in research. It will be a useful resource for an audience that has done little or no PPI activities during their career trajectory, or that are not confident with previous PPI work, and provide practical tips on how to embed PPI in research to maximise its potential. It should convince sceptical researchers to convert to actively involve patients and the community in research and get funders to rethink logistic requirements in funding applications.
Next, we will write a dedicated paper consolidating our PPI experience in the Integrate-HD project, with learnings that can hopefully be transferred to other projects and contexts.