Patient Co-Applicants in Research - advice from the UK

[Carolyn Canfield]

Some of you may know about Simon Denegri from the UK, a highly knowledgable patient leader, especially experienced in research roles. Ontario, Alberta and the Canadian Institute for Health Research have brought him in to provide expert outside advice on patient partnership. Maybe others, too?

His email newsletter "Simon Denegri's Lay Review" is wonderful. Subscribe here to receive it by email.

The latest today features a useful guide from the UK. Take a read as follows from Simon's January 30 post and follow the link below...

Best wishes to all for a productive and rewarding year. Stay connected!

Warm regards, Carolyn

According to the recent [UK] national survey of people's experiences of being involved in National Institute for Health Research (NIHR)*, one in five patients, carers and members of the public told us they had been a 'co-applicant' in research. An equivalent number described themselves as being a 'member of a research team.'

As a member of review panels and as a reviewer of applications it is certainly my experience that more and more research teams cite having public co-applicants as part of the team. And I suspect that it is a trend that will continue if not accelerate as researchers and the public strive to forge mutually beneficial partnerships.

But what does being a 'public co-applicant' mean in practice?

An active debate on this question has ensued over the last few years. It has been fuelled by both good and bad experiences. A key determinant of this experience is whether there is a shared understanding of the role, rights and responsibilities of being a public co-applicant as a member of the team. Not to mention clarity around issues such as reimbursement, training and communication. These things can only be achieved through early and open discourse supported by good information.

Trouble is, up until now, good guidance to support these conversations and the subsequent partnership that forms from them has not existed.

Thankfully, INVOLVE, the Health Research Authority (HRA) and NHS R&D Forum have today stepped into the breach by publishing 'Public co-applicants in research: guidance on roles and responsibilities.' It provides practical help and support on all aspects of the role including the legal context and is interspersed with the views and experiences of co-applicants and researchers. By identifying the good and the not so good it will help us evolve best practice in this area.

It's an extraordinarily helpful document which is surely a must-read for those setting out on this path but also for people who are already public co-applicants and the researchers they are working alongside.