By Simon Denegri, NIHR National Director for Patients, Carers and the Public

Published: 15 March 2018

Simon Denegri, NIHR National Director for Patients, Carers and the Public, gives us a taste of things to come at the patient involvement workshops at Patients First: Pioneering Partnerships next week. 

I can think of no better example of a pioneering partnership in health research than that which exists between patients, carers and researchers.

From working together to identify research priorities, to helping to design studies and disseminate the results, it is a partnership that can mean the difference between research being a success or failure.

For over 20 years now, the UK has been at the leading edge of public involvement in research. But it is only in the last few years that our health research system as a whole has begun to embrace it with serious intent. Other nations are catching up fast. ‘Game on,’ as they say.

Our vibrant medical research charities and world-class life sciences industry - from the pharmaceutical giants to SMEs - represent a different frontier and new opportunities for public involvement here in the UK.

Free of the constraints that can sometimes bedevil public funders - however honest their intent - these sectors can bring a fresh perspective to this growing movement. I am genuinely excited about what we might hear and see at #PatientsFirst2018 in a few days time.

But how will we be able to tell that it is the real thing or simply ‘fake public involvement?’

Well, help is at hand.  I am delighted that at two workshops taking place during this year’s conference the National Institute for Health Research (NIHR), Chief Scientist Office in Scotland, Health and Care Research Wales and the Public Health Agency in Northern Ireland will be launching new standards for public involvement in research, along with the names of those organisations who have been selected to test them over the next 12 months.

The standards have been developed collaboratively with public contributors, researchers and research organisations including a public consultation last year which reached nearly 700 people.  They are therefore very much reflective of this pioneering partnership otherwise known as public involvement.

They will help organisations know what good public involvement looks like.  But, more importantly, they will empower patients and carers to ask questions of the organisations that are struggling, as well as praise those that are excelling.

With a common understanding of what good looks like we hope that the UK will not only continue to be setting the standard in public involvement but that those organisations who use them will be standard bearers for the very best in this pioneering partnership.


For further information on Patients First: Pioneering Partnerships and to register visit the conference website.