Patient & public involvement & engagement (PPIE)

PPIE stands for Patient and Public Involvement and Engagement. You can find information about involvement and engagement in research below.

Involvement

NIHR defines public involvement in research as research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them.  It is an active partnership between patients, carers and members of the public with researchers that influences and shapes research.

When using the term ‘public’ we include patients, potential patients, carers and people who use health and social care services as well as people from specific communities and from organisations that represent people who use services. Also included are people with lived experience of one or more health conditions, whether they’re current patients or not.

Here are examples of how members of the public might get involved in research:

• as  joint grant holders or co-applicants on a research project

• identifying  research priorities

• as members of a project advisory or steering group

• commenting on and developing patient information leaflets or other research materials

• undertaking interviews with research participants

• carrying out research as user and/or carer researchers

Public involvement as defined here is also sometimes referred to as Patient and Public Involvement (PPI). More information about approaches to public involvement can be found on the NIHR website.

Engagement

Where information and knowledge about research is provided and disseminated. Examples of engagement are:

• science festivals open to the public with debates and discussions on research open days at a research centre where members of the public are invited to find out about research raising

• awareness of research through media such as television programmes, newspapers and social media

• dissemination to research participants, colleagues or members of the public on the findings of a study