What is Patient and Public Involvement and Engagement (PPIE) in research?

The National Institute for Health and Care Research (NIHR) which is the research funder and research partner of the National Health Service (NHS) defines PPIE in research as:

‘Research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, or ‘about’ or ‘for’ them’.

It means:

• People sharing their views and experience with researchers to help guide and inform how their research is designed, carried out, shared and put into practice.
• An active partnership between people and researchers that influences and shapes research with clear examples of what changes have been made as a result of people’s involvement.

The NIHR defines PPE as an:

‘Activity where information and knowledge about research is provided and disseminated’.

This can include:

• Health condition specific family days where patients and the public can meet with research teams and associated charities to learn about research findings and be asked their opinions on future research aims. A way for PPI communities to meet and share their experiences and feel seen and heard.
• Engagement events in GOSH such as International Clinical Trials Day and Rare Disease Day where researchers can use creative methods to speak to patients and the public about their work and meet the hospital community.
• Science festivals and other research related events in the community with science demonstrations where members of the public are invited to find out about research and researchers can raise awareness of specific health conditions and research topics.
• Raising awareness of research through media such as television, newspapers. Online via social media and GOSH website.
• Sharing research results or findings to people who have taken part in research, colleagues or members of the public at conferences or other events.
• Research and science career talks.
• At schools and in the community.
• Online webinars or meetings with condition specific groups or charities

Researchers know that when they engage with people about research it often helps discussions to begin for future research direction and to build relationships with future PPI contributors in their research.

Most funding bodies ask researchers about their plans and budget for patient and public involvement including plans for evaluating impact. Researchers need to have clear reasons if they have no plans to involve patients and the public now or do not have plans to involve them in the future. Researchers’ responses to these questions will be considered by the reviewers, research panels and boards (which increasingly include patients and members of the public) and will influence funding decisions.

As well as helping to make sure research is acceptable, of high quality and relevant, patients and the public also have the right to be involved in decisions about research which is funded by public money.

Participation in research is different from involvement in research. Participation in research is where a  patient is actively taking part in a research trial or study. Research participation comes with research governance arrangements that include Research Ethics Committee (REC) review to protect the rights, safety, dignity and well-being of research participants.

Recruitment to:

• a clinical trial (eg to test how well a new treatment works)
• a research study
• completing a questionnaire or survey as part of a research study
• joining a focus group as part of a research study

Of course, research participants can also get involved in research.

Researchers do not need to submit an application to a Research Ethics Committee (REC) in order to involve patients and the public in the planning or the design stage of their research or obtain formal consent (agreement) from patients and the public to involve them in their PPI plans.

However, researchers must not approach patients and their families whose care they are not involved with to be involved in their PPI activity. To do that they need to request a colleague responsible for their care to make initial introductions- they cannot access their contact details yourself.

As part of our joint BRC and CRF PPIE Strategy, we are growing our PPIE community.

Find out about ways to get involved in research at GOSH.