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Explaining PPIE in Research

What is Patient and Public Involvement and Engagement
(PPIE) and why is it important for high-quality research?

What is PPIE?

PPIE stands for Patient and Public Involvement and Engagement and refers to an active partnership between researchers and people with lived experience of the health condition which is being researched. This partnership means that these individuals are involved as co‑creators rather than passive subjects, ensuring that research reflects real‑world needs and priorities, with shared power, decision‑making and responsibility throughout the research lifecycle.
 

Below is the National Institute for Health and Care Research (NIHR) definition of the ways people get involved in research, showing how ‘involvement’ is distinct from ‘engagement’ and ‘participation’:

Involvement

Involvement is research done with or by patients and the public, not to, about or for them. It is about working collaboratively with patients and the public and sharing decision-making. Examples of public involvement include:

  • Acting as members of a project advisory or steering group
  • Acting as joint grant holders or co-applicants on a research project
  • Identifying research priorities

Engagement

Engagement focuses on raising awareness and sharing research knowledge and findings. Examples of engagement include:

  • Attending public science festivals with discussions on research
  • Raising awareness of research through media such as television programmes, newspapers and social media
  • Disseminating study or research study findings to research participants, colleagues or the public.

Participation

Participation is about people giving formal consent and taking part in a trial or study.
Examples of participation include:

  • Taking part in a clinical trial or research study
  • Completing a questionnaire or participating in a focus group as part of a research study.

Resources

For experts by lived or living experience of mental illness

We have collated some materials to help patients, carers, the general public and people with living and lived experience of mental health issues learn more about how they can co-produce research.

We have put together a slide deck with the key considerations for anyone wanting to share their lived experience to help further research. 

We have put together a glossary of research and scientific terms that you might encounter when working on a research project.

Hear from some of the experts by lived experience who are already contributing to research projects. 

For scientists and researchers

We have collated some materials to help researchers who want to incorporate PPIE into their existing and future projects.

We have put together a slide deck with the key considerations for anyone wanting to share their lived experience to help further research. 

We have put together a quick reference guide on what you need to know to ensure your PPIE activities result in the best outcomes.

Hear from two contributors to a study on psychosis and the value they brought to the project.

MQ's Lived Experience Research Network

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