Patient and Public Involvement in Rare Disease Research
Online Event – 18.30pm, Wednesday, June 14th 2023
HRCI were very pleased to host a Rare Disease Forum event, centred around the topic of public and patient involvement (PPI) in research on June 14th. This event aimed to shift the paradigm from rare disease research conducted “to,” “about,” or “for” patients and the public to research carried out “with” or “by” them. PPI fundamentally enhances the quality and relevance of research, ensuring that it becomes more meaningful and acceptable to the very people it is intended to benefit. It is important to note that PPI goes beyond merely being subjects or participants in research; it embodies a partnership and co-creation approach, combining research expertise with the invaluable lived experiences of individuals affected by rare diseases.
We find ourselves amidst a remarkable cultural shift where PPI is progressively becoming the norm in health and social care research. In Ireland, this transformation has been driven by the dedicated members of the Rare Disease Forum Steering Group, the PPI Ignite Network, the Health Research Board, and numerous others. We collectively examined what makes PPI effective and successful and identified the obstacles that we encounter along the way. Together, we considered what is required to strengthen PPI in rare disease research and how we can work together to achieve it.
On behalf of the RDF Steering Group, this event was led by Health Research Charities Ireland (HRCI).
Event Video and Further Information
If you would like to watch a video of the Rare Disease Forum, please click here to visit our YouTube Channel.
Links to rare disease organisations and resources as well as further information on the topics discussed at the Forum can be found here
We hosted a poll using an online tool (Mentimeter) to ask two questions of all attendees at the Rare Disease Forum. This was to gauge people’s knowledge of where to go to participate in research and also to identify some of the barriers to participation. You can find the responses here.
You can access the speaker slides by clicking on the title
Patient experience of PPI in research
Stacey Grealis; Patient Partner with The Centre for Arthritis Research in UCD (UCDCAR ) and the European League Against Rheumatism (EULAR)
PPI in the Rare Disease Clinical Trial Network
Dr Siobhán Hendrick; Patient & Public Involvement Liaison, Rare Disease Clinical Trial Network
Agenda
Please click on each speakers name to access their bio.
18.30 Welcome from the meeting chair
Sandra Collins; Person with lived experience of rare disease and Rare Disease Forum Steering Group member
18:40 A glimpse into rare disease research in Ireland
Dr Avril Kennan; CEO, Health Research Charities Ireland
18:45 PPI Ignite & rare diseases
Lorna Kerin; Manager, UL PPI Research Unit & Director, LoveKnowledge Consultancy
19.05 Patient experience of PPI in research
Stacey Grealis; Patient Partner with The Centre for Arthritis Research in UCD (UCDCAR ) and the European League Against Rheumatism (EULAR)
19:20 PPI in the Rare Disease Clinical Trial Network
Dr Siobhán Hendrick; Patient & Public Involvement Liaison, Rare Disease Clinical Trial Network
19.35 Reflections and audience questions
Rosaline Callaghan; Person with lived experience of rare disease and Rare Disease Forum Steering Group member
19:45 Mentimeter audience engagement
Linda McGrath; Events & Communications Coordinator, Health Research Charities Ireland (HRCI)
20:00 Meeting close
