Understanding Patient and Public Involvement and Engagement (PPIE)

This page explains the concepts behind Patient and Public Involvement and Engagement (PPIE) and the terminology used across EBRAINS projects and activities. It is for anyone designing or running research, tools, or services that could benefit from patient or public perspectives.

Why PPIE matters

EBRAINS encourages projects and activities to involve patients, people with lived experience, carers, patient organisations, and the wider public whenever appropriate. The aim is to foster an inclusive, transparent and sustainable approach to PPIE within the EBRAINS Research Infrastructure, so that patient and public perspectives can contribute to the design, implementation, interpretation, dissemination and impact of EBRAINS research and services.

PPI versus PPIE

“PPI” (patient and public involvement) refers to research practices conducted with or by patients or the broader public at project level, in the context of a single study. Activities can include identifying research priorities, research design (for example developing patient information), conduct (for example interviews with research participants), dissemination, and governance. PPI does not necessarily involve the broader public or governance beyond the project.

“PPIE” (patient and public involvement and engagement) emphasises interaction beyond a single project by sharing results and informing the public, with the broader aim of accountability through wider communication of findings. For the EBRAINS Research Infrastructure, terms like “RI level PPIE” or “PPIE across EBRAINS” refer to these broader objectives. Examples of formal engagement activities are public talks, open days, accessible reporting, and community outreach.

Who is a patient?

A patient is an individual with lived experience of a health condition or disease relevant to the research, including current and former patients — “any natural person who seeks to receive or receives healthcare” (EU definition). Some literature distinguishes patients from the broader public and from caregivers or family members; others group caregivers and family in when their experience informs the patient perspective. Further terms in use include expert patients, patient associations, patient advocacy, and people with a professional role in the health system.

Who is the public?

The public includes community members, potential patients, carers not currently experiencing a condition, and individuals from diverse backgrounds who can provide societal, ethical, or translational perspectives to the project.

Further terms

• Participation refers to the recruitment of people who take part in a clinical trial or clinical research (for example cohorts), such as interview partners in a research study.
• Co-researchers often denotes equal authorship or substantive contributions to research tasks and authorship by people with lived experience or the broader public. In some contexts the term is used more loosely to describe advisory roles.
• Lay advisors or lay representatives is common in Health Technology Assessment (HTA) and governance contexts, to distinguish non-professional insights from clinical or scientific leadership.
• Stakeholders refers to the broad range of communities with an interest in generating useful and relevant healthcare research evidence: patients, families and caregivers, patient advocacy groups, clinicians, researchers, purchasers of health benefits, payers, funders and industry, hospital and health systems, policy makers, and health and medical professional educators. Their degree of involvement can range from advisory input on design and consent processes to governance rights in data access decisions or co-ownership of research agendas.

PPIE stakeholders by activity