A brief update on NIHR’s review of public involvement in research

We have just passed the mid-way point in the ‘evidence-gathering’ phase of NIHR’s strategic review of public involvement entitled ‘Breaking Boundaries.’  So here’s an unofficial Chair’s view.

The announcement of the review on 31st March, its terms of reference and our initial call for views can be found on NIHR’s website here

People can at the moment choose to respond to the review using the downloadable questionnaire on the website, or using the online survey which is available here.  So far, almost 200 people have responded to the online survey.  61% have said they are a service user/patient/consumer/carer.

In addition there is now a facilitator guide as well as some PPT slides available for people who are planning to hold a group discussion with patients, carers and colleagues before responding.  Our sense is that quite a few organisations are planning to do this as part of their response.  Anyway, the guide and the slides can be found at the end of this post.

Also over the last month we have held discussion sessions at four meetings where the excellent RAPPORT study of public involvement was reported. These events took place in Manchester, Bristol, London and Cambridge and reached about 200 people, again mostly patients, carers and members of the public.  Thinking about these sessions and the sorts of comments we are getting through the written and online survey evidence, some key issues and questions.  Thematically, these might be headlines:

  • The purpose and value of public involvement
  • The infrastructure needed, national, regionally and locally, to deliver public involvement
  • The resources necessary to deliver public involvement that works
  • The importance of relationships to the success of public involvement
  • The learning (knowledge, skills, experience) needs of all partners and how to support them
  • The need to tackle the impact and outcomes agenda

We have also held two ‘international’ sessions by phone with colleagues from Canada, USA, Denmark, Australia and the European Union.  It was clear from these conversations that the UK is held in very high regard for what it has achieved in public involvement; we are the recognised leader in many respects. Also, that this leadership is closely associated with the work of INVOLVE over the years.  Nonetheless, we have much to learn from them.  We are all battling with the need to prioritise and find models suited to the future not the past or present.  The case for an international alliance or association where we can share our ideas and challenges is growing in strength.

This week we will be meeting with representatives and members of the Association of Medical Research Charities (AMRC) and Association of the British Pharmaceutical Industry (ABPI) to get their views on public involvement in research.  Heading into June there will be a range of events where we will be holding ‘consultation’ sessions including North West People in Research Forum on 30 June and the Health Services Research Network (HSRN) conference on 19/20 June.  And, finally, some yet-to-be scheduled tweet chats and social media activity.  Please remember that the hashtag is #PPIBreakingboundaries

Please keep the responses coming in.  I know I speak on behalf of all the review panel when I say they are insightful, helpful and hugely important in their own right.

The  previously mentioned guide can be found here: 

  And the slides can be found here:

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