Definitions for patient and public involvement and engagement

Patient and Public Involvement (PPI) in research is research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them.

It is an active partnership between researchers and patients, carers and members of the public throughout the research process that influences and shapes research – for instance in helping to plan, design or carry out research. It does not refer to more general awareness raising activities or to the involvement of people as participants in trials.

Some examples of this involvement:

• helping identify research questions and priorities to ensure that the research priorities align with those of patients.
• looking at research processes and advise researchers on how practical and acceptable they are (research design and protocol)
• commenting on and developing patient information leaflets, other research materials and reviewing Plain English Summaries.
• joining a project advisory, focus or steering group.

Who makes up our GOSH PPI Community?

• Patients: at GOSH and other hospitals, patient groups.
• Public: siblings/friends of patients, past patients/their family members, parents-guardians-carers and the wider public community.
• Public: GOSH and UCL GOS ICH staff, and other staff at our PEI partner sites and beyond.

Engagement is sometimes used synonymously with Involvement, but this strategy defines it as the related processes of sharing information about research and research findings with patients and the public (including access to evidence that might inform their individual treatment), and the promotion of participation in research.

Examples of engagement:

• Events, seminars, webinars open to patients and the public with debates and discussions on research.
• Science festivals or outreach events where people are invited to take part in hands on activities to learn more about research.
• Raising awareness of research through media such as television programmes, newspapers, social media, podcasts, websites.
• Dissemination to research participants, colleagues or patients and members of the public on the findings of a research trial or study.

Participation is also sometimes used synonymously with ‘Involvement’, but this strategy defines it as the role of patients or the public as the subjects or participants in research studies or research trials.

Examples of participation:

• people being recruited to a clinical trial or other research study (e.g., to test the efficacy of a new treatment) as part of or in addition to their routine clinical care.
• completing a questionnaire or participating in an interview or focus group as part of a research study.

These different activities – involvement, engagement and participation – are often linked and, although they are distinct, they can complement each other.

Co-production is an approach to working together in equal partnership and for equal benefit.

Impact of patient and public involvement in NIHR health and social care research

“The changes, benefits and learning gained from the insights and experiences of patients, carers and the public when working in partnership with researchers and others involved in NIHR initiatives.” (Co-produced by: NIHR Public Involvement Impact Working Group 2019)