The use of social media as a way to involve people in research is a relatively recent development, so we brought a project advisory group together to consider the opportunities and the challenges of using social media in this way, and to develop guidance.

The group:

  • did a scoping exercise to look at the information already available
  • consulted with the INVOLVE Group membership and public involvement leads from a range of National Institute for Health Research organisations
  • put out a call for people who had used social media in this way to get in touch
  • carried out interviews with those who had used different types of social media
  • held a Twitter chat on 18 June 2014 on the use of social media for public involvement in research (Storify summary here)
  • sought comments on the draft guidance from those who had experience of using social media for public involvement
  • presented their work at the INVOLVE 2014 conference (slide set here) and
  • held a follow-up Twitter chat on 13 January 2015 (Storify summary here).

Guidance on the use of social media to actively involve people in research
The guidance provides examples of ways in which different types of social media are currently being used to involve the public in research, the benefits, challenges, risks and ethics of using social media for involvement, and some top tips and things to think about.

Examples of projects using social media for public involvement
The examples give full details of projects in which social media has been used to involve members of the public.

The guidance and examples are the first step in helping people to navigate this new type of interaction, and we will look to renew it over time. If you are using social media to actively involve people in research, especially if you are using a type of social media not mentioned in this guidance, please contact us at involve@nihr.ac.uk and tell us your story.