How can patients be involved in the implementation and improvement of research?

Written by Dr Sarah Knowles, University of Manchester 

Earlier this year, I received the great news that I’d been successful in applying for an NIHR Knowledge Mobilisation Research Fellowship. The School asked if I’d be happy to say something about it for the newsletter and I said yes straight away, but it’s taken me a while to write this post. I think it’s because previous posts I’ve written for the newsletter have been in the “unapologetically braggy” genre – celebrating an achievement, or describing something I’m proud of, and trying to be clear about how the SPCR has supported and enabled that.  This felt like the wrong approach to take with the fellowship, because it made the process and the eventual success seem a lot tidier than it really was. In truth, I applied for an NIHR fellowship immediately after my SPCR post but didn’t get it, and that failure seems as much responsible for where I am now. The post “The SPCR and my failure: A retrospective” didn’t sound much fun to write though, and I suspect would be even less fun to read…

I genuinely did want to write something that acknowledged how important my time with SPCR had been though. I think my best, and I hope most helpful, take on would be: the School is a great place to get a fellowship, and it’s a great place not to get one. What I mean by this is that the expertise I’d developed through the support of the previous fellowship, plus the network and collaborations made possible by the school, meant that (after a period of hearty and essential feeling-sorry-for-myself), I felt able to look forward again and take another shot at a fellowship programme, this time in Knowledge Mobilisation Research.  A big part of this was about confidence – When I told people in the School that I hadn’t be successful, they looked genuinely disappointed for me. It’s a small thing but at the time it felt reassuring, that I hadn’t just been trying to get something out of my league and it was ok to feel sad that it hadn’t worked out. Those little oh-what-a-shames communicated that people believed in me, at a time when self-belief had taken a bit of a hit.

Following my fellowship with the SPCR, I started working for the Greater Manchester CLAHRC, and the studies I worked on there confirmed to me that I wanted to focus on implementation research, getting evidence into practice to really impact care (values core to the SPCR as well!) My new fellowship will therefore look at exactly that,  using codesign methods to think about how patients themselves can be involved in implementation and improvement. I’ll be working on the Connected Health Cities programme, which aims to create a “Learning Health System” by integrating different health data sets. My fellowship will explore how patients can best be involved in such a system.

In terms of expertise, my fellowship topics probably seem worlds apart – my original SPCR fellowship proposal was about individual patient data meta-analysis to look at patient preferences for treatment, while my KMR fellowship will look at how patients can be involved in data-driven service improvement. To me there’s a common theme, of thinking about doing things differently with data we have, and doings things focused on what they mean to patients. But although there isn’t a neat thematic line between the School fellowship and my current one, the focus of my fellowship now has its roots absolutely in my experience in the School. The expertise I’d developed in patient involvement in research which I drew on in the KMR had grown through my work with the SPCR-supported PRIMER group and practiced in SPCR funded events like the Patient Hack Day. The methods I proposed using, drawing on codesign approaches, I had learned on the SPCR funded AESOP and EPHESUS projects. These weren’t planned into my original protocol, but were opportunities I was able to take and collaborations I was able to benefit from through being part of the SPCR.

I’m enormously grateful to the SPCR for their support and I hope to pay it forward. If anyone in the School is thinking of applying for a fellowship and wants a sounding board then do get in touch. And if you did apply, and didn’t get through this time round, then I’m here with sympathy and an endless supply of inspirational cat pictures.