New guidance for lab-based researchers on patient and public involvement

A lot of guidance has been written on involving patients and the public in clinical research. But there’s very little aimed at researchers who work mainly in a laboratory, who may have very little or no contact with people affected by the condition they are studying.

We’ve helped to develop a website in partnership with researchers, patients and carers. The site offers practical advice and resources to help lab based researchers at all stages of their careers to actively involve patients, carers and members of the public to enrich their work.

How the guidance was developed

The guidance was produced in response to a project that explored experiences of patient and public involvement (PPI) in 6 research studies, ranging from a PhD to a large scale programme grant.

Researchers leading these studies were interviewed before and after carrying out PPI activities. Patients, carers and public contributors who were involved in the PPI activities also shared their experiences via surveys and interviews.

The findings showed that PPI in lab-based research can have a wide ranging impact - from helping researchers to think differently about what they are studying and motivating them in their work, to bringing hope for patients and public contributors involved and helping them feel part of a wider community. 

Training and support was also shown to be vital in helping lab-based researchers involve people effectively. So, the website was developed as a way to support researchers to plan involvement activities and help them feel more confident in working with patients and the public.

Rachel Hughes and Tony Vernon were 2 of the researchers involved in the project. They both received support from Parkinson’s UK to connect with people affected by Parkinson’s and to plan and carry out the PPI activities for their studies.

Tony said: "The response was overwhelmingly positive about the research we described, everybody seemed to think that it was a good thing, So that obviously inspires us to keep going."

Rachel said: "Sometimes you get so far removed when you’re in the lab, you forget what you’re doing almost and why you’re doing it, so I think meeting people with Parkinson's and their families, it really helps you to remember why you’re doing it."

Dr Natasha Ratcliffe, Research Involvement Manager at Parkinson’s UK comments:

"We fund many lab based research projects through our grants programme and the Virtual Biotech. Though we’ve seen a number of great examples of lab-based researchers doing PPI, many also tell us that they find it difficult to know where to start.

"This project has helped us better understand what researchers and people affected by Parkinson’s need to help them work together, enabling us to provide the best support to help drive Parkinson’s research forward."