What is PPIE?
Public and Patient Involvement and Engagement (PPIE) refers to the active partnership between patients, carers, the public, and researchers, ensuring that research is shaped with or by people rather than to, about, or for them.
It combines two complementary dimensions that are equally essential, though they serve different purposes across the research ecosystem:
- Involvement: Active collaboration in research processes. Patients, carers, and the public are equal members of the research team and are involved at all stages of the research life cycle.
- Engagement: Researchers disseminate knowledge and communicate research implications to the public.
What PPIE is not
Not the same as being a research participant. Research participation means research being conducted on, about, or for patients and the public, where people typically provide samples and/or data as participants in a study.
Not tokenistic involvement, for example, when people are invited to join a research advisory group but their views are not listened to or considered when making decisions.
Why it matters?
The key benefits of PPIE are:
01
Ensuring research addresses real-world needs and priorities
02
Improving study design, relevance, and outcomes
03
Strengthening trust, transparency, and accountability
04
Enhancing impact and uptake of research findings
Who is involved?
PPIE aims to be as inclusive as possible and actively seeks to involve a diverse range of people, especially from underrepresented groups. It includes:
Patients and former patients
Carers and families
People with lived experience of a condition
Communities and patient organisations
How does PPIE work in practice?
PPIE can be embedded across the full research lifecycle:
Priority-setting
Identifying research questions that matter to patients
Dissemination
Co-creating plain-language summaries and outreach activities
Identifying research questions that matter to patients
Co-developing protocols, consent forms, and materials
Participating in advisory boards or steering groups, sometimes getting involved in collecting data (where appropriate)
Providing insight into findings and their meaning
Co-creating plain-language summaries and outreach activities
Study design
Co-developing protocols, consent forms, and materials
Analysis & interpretation
Providing insight into findings and their meaning
Conduct of research
Participating in advisory boards or steering groups, sometimes getting involved in collecting data (where appropriate)
At ERDERA, Public and Patient Involvement and Engagement (PPIE) is embedded as a core, cross‑cutting function across governance and all work packages. People living with rare diseases are placed at the centre of the programme and are involved as co‑designers, implementers, and evaluators of research.
This approach is operationalised through a dedicated PPIE group and ensures that PPIE is not a standalone activity, but a system‑wide practice integrated into governance, funding processes, and research implementation.
Key takeaway
PPIE transforms research from a researcher-driven process into a collaborative partnership, ensuring that science is more relevant, inclusive, and impactful for patients and society.
