What is Patient and Public Involvement and Engagement?

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

- NIHR INVOLVE 

When we talk about patient and public involvement, often abbreviated to PPI, we talk about including public contributors throughout the research cycle in a meaningful way.  Public contributors are not study participants, but people who provide input and feedback based on their lived experience in the condition or status that a researcher is investigating. The word 'public' can refer to patients, potential patients, carers and people who use health and social care services, members of organisations that represent people who use services as well as members of the public.

Whereas patient and public involvement focuses on a specific research project, programme or process, engagement can connect with the public discussing science on a more general level or addressing topics like research ethics.  Public engagement can also include opportunities for researchers to discuss their preliminary ideas for future studies or involve people as contributors and conducting part of a research project as citizen scientists.

Public engagement describes the myriad of ways in which the activity and benefits of higher education and research can be shared with the public. Engagement is by definition a two-way process, involving interaction and listening, with the goal of generating mutual benefit

- National Co-ordinating Centre for Public Engagement

Just like patient and public involvement, public engagement can occur through the research cycle to gain input from the public and disseminate research outcomes.

There is no ready-made approach when thinking about involvement, it has to be customised to your study and resources available for involvement.  Benefits of involvement and engagement include higher quality and more relevant research, increase legitimacy, more impactful research.  For researcher it can be a very motivational and inspirational activity to carry out.  When considering patient and public involvement and engagement it is important to keep in mind why you are doing it and who it is you want to involve or engage with. 

The NIHR HPRU has written a strategy elaborating on their commitment to patient and public involvement and engagement