Planting the public involvement seed early in researchers’ careers

By Peter Thompson

The National Institute for Health Research (NIHR) invests over £100m a year in providing training awards to early career researchers to help establish their academic careers. Six programmes encompassing 24 award schemes provide support for researchers from Masters level all the way to a Research Professorship, and these are managed by the NIHR Trainees Coordinating Centre (TCC) – www.nihr.ac.uk/about/about-the-trainees-coordinating-centre.htm. NIHR trainees represent the research leaders of the future and instilling in them the importance of public involvement  and how to do it well highlights the commitment the NIHR has to helping people become involved at all stages of the research it funds. 

In July 2013 NIHR TCC asked Bec Hanley and Derek Stewart (www.becandderek.co.uk) to run a workshop for 25 NIHR doctoral award holders to introduce them to public involvement and help enable them to explore ways they could build public involvement  into their research. Providing this workshop to NIHR trainees on an annual basis is a key part of NIHR TCC’s patient and public involvement (PPI) strategy (www.nihr.ac.uk/documents/get-involved/TCC-PPI-Strategy-2013.pdf). The specific aims of this workshop were to:

• build understanding of patient and public involvement in research
• start involving patients and public in the trainee’s research, or develop their  involvement activities if they were already active in this area
• learn from other participants about what might work in specific contexts.

Feedback from the attendees was overwhelmingly positive, with 19 out of 20 respondents saying the workshop improved their understanding of public involvement. All 20 respondents said the workshop enabled them to think about involving the public  in their own research and allowed them to learn from other participants. Several NIHR TCC programme managers also attended the workshop and participated in the activities alongside the trainees and this was a very effective learning experience for them too.      

NIHR TCC has plans to repeat the workshop for doctoral trainees in July 2014 and is also considering expanding the provision of NIHR public involvement workshops to include a ‘master class’ version for trainees with more experience in involving patients and the public in their research. 

Workshop attendee Elaine Cloutman-Green, a NIHR / Health Education England (HEE) Healthcare Science Doctoral Research Fellow, reflects on her experience of the workshop and how it has influenced her since:

“Working within infectious diseases and infection control can sometimes make it difficult to involve the public in your work. My research is funded by Health Education England (HEE) and most of it takes place in a lab filled with agar plates and black boxes that print graphs. Usually it’s just me on my own with some cheesy music for company. When I thought about the idea of patient and public involvement, I couldn’t really see how it would work. I needed guidance about what public involvement  (PPI) really was and how I could do it in my field. When I saw a workshop advertised I jumped at the chance to attend.

The workshop itself was a mixture of practical exercises and lectures, led by facilitators called Bec and Derek. They had experience of being involved in research as members of the public and everyone there came from different areas of research. I found this invaluable as everyone had different barriers to implementing PPI and different ideas about how to overcome these problems.

For me, the workshop accomplished two things. Firstly it helped me understand that there are different types of PPI, some of which would be more possible for my type of research than others. Most of what I had done to date had been outreach and was about engaging people in my research by talking to them about what I do. However, there was another level that I could undertake, involvement. Involvement meant that I could include people in parts of my research like grant applications without them having to be participants in the research itself, as would be the case in clinical trials. Not only did the workshop make me realise that I could extend what I was currently doing but it also gave me new ideas about how to do it. Secondly, it really helped me to understand who the relevant public was for me;  this was something with which I had always struggled.

The big question is: has the workshop changed what I do? The answer is a clear yes. The biggest change is that I have recruited 14 people through social media and set up a clinical research group. These people have all had contact with the NHS in the last 12 months and are involved in writing grant applications with me. I hope that we will expand their involvement as the research progresses. The benefits of having them involved have far outweighed any time taken to administer the group and I for one will never look back.”

Contact: Peter Thompson, Assistant Director, Personal Awards, NIHR Trainees Coordinating Centre

Email:  Peter.Thompson@nihrtcc.org.uk
Tel:  0113 346 6261