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Independent guidance for better public participation in health and care research
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Digital involvement

Social media for active public involvement

Digital channels can broaden conversations around research when they are planned with care, clear purpose and a commitment to listening as well as sharing.

A practical introduction

Using online spaces to involve people

Social media can help research teams hear from people, test ideas, share accessible information and keep contributors connected. It is most useful when it supports meaningful influence rather than simply broadcasting updates.

Earlier work on this topic brought together a project advisory group to examine the opportunities and challenges of using digital channels for public involvement. The work included a review of available material, conversations with people who had used different online formats, and feedback on emerging guidance.

What the work explored

  • existing information and examples of online public involvement;
  • experiences from people using different digital tools and formats;
  • how conversations can be opened to contributors beyond established networks;
  • questions of access, privacy, moderation, ethics and expectations; and
  • ways to collect feedback and explain how it informs decisions.

Digital methods are not a substitute for every form of involvement. A good plan considers who may be excluded, which communication formats are accessible, and whether an online conversation is the right route for the decision at hand.

Keep the purpose visible

Before choosing a channel, state what you want contributors to help shape, how comments will be considered, and what response people can expect after contributing.

What to plan

Build participation into the approach

Use online activity as part of a wider involvement plan, with clear boundaries and a route for acting on what people share.

Set the question

Be specific about the decision, material or priority that contributors can help shape. Avoid asking for feedback that cannot affect the work.

Allow enough time

Give people reasonable notice, keep discussion open for an appropriate period and plan time to review contributions carefully.

Connect the routes

Offer alternatives where possible, such as meetings, phone or written options, so involvement is not limited to one digital format.

A simple process

From invitation to learning

A structured approach helps online conversations remain respectful, useful and accountable.

Identify the influence

Describe the research decision or material that public input can genuinely affect.

Choose accessible routes

Consider access needs, digital confidence, privacy and alternatives to online participation.

Support the discussion

Use clear information, moderation arrangements and realistic expectations for response.

Report back

Explain the themes heard, decisions made and any limits on what could change.

Questions to consider

Digital involvement FAQ

Is social media suitable for every involvement activity?

No. It can be useful for some conversations, but the topic, audience, sensitivity of the material and potential for influence should determine the approach.

How can a team make online involvement more inclusive?

Offer more than one way to contribute, use accessible language and formats, allow enough time, and check whose perspectives may be missing.

What should an invitation explain?

It should say why input is requested, what people are being asked to consider, how contributions will be handled, and when contributors can expect an update.

How should privacy be considered?

Be transparent about the public or private nature of a space, avoid inviting personal information that is not needed, and follow appropriate governance processes for the work.

What happens after people contribute?

Close the loop. Share a short, accessible account of the themes received, the decisions taken and any suggestions that could not be used.

Where can I find examples?

The library of examples provides project material for further reading.

Need a starting point?

Find the right guidance for your plan

Send a concise description of the research stage and the involvement question you are working through. Involvestory will help you identify relevant material on this site.

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