On 27 th May 2021, JPND held a virtual workshop at the annual Dementia Forum X where participants gathered ideas and insights from the world’s leading researchers, policy makers and stakeholders in the field of dementia.
Titled Patient and Public Involvement in Research (PPI), the workshop introduced JPND and its PPI journey. JPND Chair, Professor Philippe Amouyel, kickstarted the workshop with a brief introduction on JPND, its goals and its longstanding engagement in PPI. Under the expertise of Professor Mogens Hørder, JPND’s management board member and representative of member state Denmark, JPND developed a concrete strategy for the implementation of PPI in 2015. Implemented as a learning process and in parallel with JPND’s annual calls, offering the best platform to showcase PPI, researchers are able to truly understand what PPI in research means and how to handle PPI in research.
Moderated by Richard Andersson, JPND’s management board member and representative from the Swedish Research Council and Alexandra Rodrigues, JPND’s representative from Innovation Fund Denmark, the workshop was capped and attended by 50 participants and many more who showed up to listen. JPND took this opportunity to showcase two pre-recorded interviews by PPI expert Professor Mogens Hørder, and Mr Chris Roberts, Chairperson for the European Working Group of People with Dementia under Alzheimer Europe and Ms Jayne Goodrick, member of the Carers Advisory Panel for Dementia Carer Counts.
Professor Hørder talked about the importance and value of PPI in research (click here for his interview) and Mr Chris Roberts and Ms Jayne Goodrick shared their personal experiences of living with dementia as a patient and a carer (click here for their interview) respectively. Guest speaker and Vice-Chair of the JPND Scientific Advisory Board, Professor Martin Rossor, discussed the concept of “patient” in PPI. He also emphasised the need to take into account participants' former experiences when engaging in PPI.
Through both live and chat sessions, participants engaged with one another and posed questions ranging from what should be done and avoided to ensure an enriching and meaningful PPI experience in dementia research for both patients and researchers; how and when clinicians can match and mediate interactions between patients and researchers, to how researchers and patients can be guided and trained on the formal and informal aspects of PPI.
The workshop was a success in creating greater awareness to JPND’s engagement of PPI in research and providing participants and stakeholders a platform to connect, and share their views about PPI’s best practices.