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Stage 1:
Understanding Public Involvement

Defining public involvement

At its core, public involvement is a process of building relationships, having conversations, and learning from one another.

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, members of the public, and researchers that influences and shapes research.

You often hear public involvement referred to as ‘patient and public involvement and engagement’ or ‘PPIE’. We feel these terms are less accessible, and have chosen to use ‘public involvement’ throughout this site.

“For me, public involvement is about working together as a team and sharing power and decision making.

The involvement is only meaningful if it means something to everyone involved and they know how they have shaped and created it together.”

- Jan, public member

When discussing public involvement, you may hear other terms such as public participation, public engagement, and co-production.

Here are the definitions of each:

Participation: research being done to, for, or about members of the public

Engagement: information being shared with members of the public

Involvement: research being carried out with or by members of the public

Co-production: research being done with members of the public from start to finish where power is equally shared, all types of knowledge are valued, and everyone benefits from working together

Check out the decision tree below to help decide which definition your activity falls under.

Benefits of public involvement

The phrase 'Nothing about us without us' reflects the moral imperative to involve public members with relevant lived experience in our research. When collecting data on, developing knowledge about, or creating treatments for certain people or groups, those people should have a voice in what that research focuses on, how that research is carried out, and how the findings of that research are shared and acted upon.

Three women standing in a circle, engaged in conversation.

Public involvement can bring a number of benefits to your work, including:

  • Ensuring research is grounded in the real experiences and needs of the people it aims to benefit, making it more relevant and impactful.

  • Making research more accessible and inclusive by improving study design and recruitment materials.

  • Providing diverse perspectives which add practical insight and inspire innovative solutions that researchers might not have considered.

  • Fostering transparency and trust, leading to greater acceptance and support for research outcomes.

“There’s real value in public involvement. It brings fresh ideas and different points of view, helping the research to be more effective and relevant to more people.”

- Asmahan Al Nidawi, public member

“Without public involvement, there is no view of experience from the people most affected by your research. Public involvement is a skill to be learned, its value is huge, and the difference made to research is grounded in the lives of real people.”

- Jan, public member

Frequently asked questions

  • In general, public involvement is not research and therefore does not require ethical approval. However, you should still consider ethics and safeguarding when planning your public involvement activity.

    If you are involving members of the public in the undertaking of research as co-researchers or peer researchers (e.g. interviewing participants or analysing data), this will require ethical approval as ethics committees want to know that public members will be appropriately trained and supported to undertake these activities.

  • No, the public members involved in designing your study should not be used as participants. This is because it can introduce bias into your study. Instead, you should have public partners who help to inform or design your study, and a separate group of patients or public members who participate in data collection.