How ERDERA addresses PPIE
ERDERA embeds Public and Patient Involvement and Engagement(PPIE) as a core, cross-cutting function within its governance and all work packages, ensuring that people living with rare diseases are involved as co-designers, implementers, and evaluators of research.
In practice, this is operationalised through a dedicated PPIE group that:
Acts as the central coordination hub for patient involvement across the programme
Monitors work packages and works with their leaders to embed meaningful patient participation
Identifies where and how patients can contribute across the research lifecycle (design, calls, governance, dissemination)
Supports onboarding and capacity-building of patient advocates
Ensures research priorities, communication, training, and national alignment activities remain patient-centred
Overall, PPIE in ERDERA is not a standalone activity but a system-wide approach integrated into governance, funding processes, and research implementation.
Who leads and drives PPIE
EURORDIS
AFM-Téléthon
World Duchenne
Organisation
Rare Diseases
International
Health Research
Charities Ireland
Genetic Alliance
UK
These partners form a multi-organisation patient-led group that meets regularly and acts as the focal point for patient engagement across ERDERA.
International perspective
Funders such as the National Institute for Health and Care Research (NIHR), the Health Research Board (HRB) in Ireland, the Canadian Institutes of Health Research (CIHR) and the National Institutes of Health (NIH) increasingly expect meaningful PPIE in funded projects.
- UK (NIHR): Global leader in embedding PPIE as a funding requirement
- Canada (CIHR): “Patient-oriented research” model emphasising co-leadership
- Ireland (HRCI): Strong focus on public involvement in health research strategy
- USA: Growing emphasis on community engagement and patient-centred outcomes with the PCORI (Patient-Centered Outcomes Research Institute) for instance.
Across these systems, the shared goal is co-production of research with those it is intended to benefit.
Key takeaway
ERDERA operationalises PPIE through a dedicated, patient-led coordination group embedded in governance, ensuring that patient perspectives systematically shape strategy, research design, funding, and implementation across the entire partnership.
Resources related to PPIE are available within the Learning Portal and can be accessed by applying the relevant filters.
Discover available resources
The impact of public involvement in health research: what are we measuring? Why are we measuring it? Should we stop measuring it?
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