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Independent guidance for better public participation in health and care research
Public insight. Better research.

Research shaped with people, not simply for them

Involvestory brings practical, plain-English guidance together for members of the public, researchers and organisations working across health, public health and social care.


About this site

Making public involvement useful, respectful and clear

Good involvement connects lived experience with research knowledge. It can help teams ask more relevant questions, improve study materials and communicate findings in ways people can use.

Involvestory is an editorial resource for understanding and planning this work. It explains core principles, points readers towards practical tools and encourages teams to record how public contributions influence decisions.

Read about Involvestory
Choose your route

Guidance for where you are now

Find an accessible introduction, plan a collaborative project or explore practical reference material.


For members of the public

Understand possible roles, questions to ask and what constructive involvement can look like.

How to get involved →

For research teams

Build involvement into your plan from the start, with attention to access, support and feedback.

Researcher briefing notes →
What is included

A practical resource library

01 / Plan

Briefing notes

Prompts for defining purpose, identifying contributors and creating a realistic plan.

Explore briefing notes
02 / Communicate

Plain-English support

Guidance for summaries that explain the question, approach and relevance without avoidable jargon.

Write a clearer summary
03 / Learn

Evidence and examples

Libraries for examining approaches, practical experience and learning across projects.

Browse the libraries
04 / Apply

Involvement standards

Principles to support inclusive opportunities, good communication, learning and visible influence.

Read standards guidance
How we work

A clear path from purpose to learning

The details vary by project, but thoughtful involvement follows a transparent process.

Define the purpose

Set out what can be influenced, why public insight is relevant and who needs to be included.

Make participation possible

Use accessible information, offer suitable formats and explain support from the outset.

Work together

Create space for different perspectives, record decisions and avoid unexplained technical language.

Close the loop

Explain what changed, what did not and why. Capture learning for the next stage.

Recent reading

Ideas and practice

View all news
People reviewing research notes around a table

Giving useful feedback in health research

A practical look at preparing feedback, choosing the right route and describing an experience clearly and constructively.

Read the overview →

What matters in informed consent

Key considerations when researchers ask people to help review consent information and processes.

Read more

Learning through co-production

Questions for teams reviewing shared decisions, roles and influence during a research project.

Read more

Including children and young people

Planning age-appropriate, supported contributions while being clear about boundaries and decisions.

Open the report page
Common questions

Public involvement FAQ

Is public involvement the same as participating in a study?

No. Participation means providing data as part of a study. Involvement means helping shape research decisions, materials, priorities or communication.

When should involvement begin?

Ideally while the research question and plan are still open to change. Early conversations help clarify where public insight can have genuine influence.

Who should be involved?

That depends on the research question and the people likely to be affected. Teams should consider whose perspectives may be missing and reduce practical barriers to taking part.

How should technical information be shared?

Use clear language, define necessary terms and provide information in a format people can navigate. The jargon buster is a useful starting point.

How can a team show that involvement mattered?

Keep a simple record of contributions, resulting decisions and reasons. Share that record with contributors and explain when a suggestion cannot be adopted.

Where can I find more detailed answers?

Visit the full frequently asked questions page or explore the resource centre.

Need a starting point?

Tell us what you are trying to understand

Send a concise description of your question and the stage your work has reached. Involvestory will help you identify relevant material on this site.

Email Involvestory