Patient power: How one patient editor influences research
BMJ 2024; 386 doi: https://doi.org/10.1136/bmj.q1459 (Published 04 July 2024) Cite this as: BMJ 2024;386:q1459
Why do you do it?
There are three reasons. Firstly, I’ve always believed in citizens taking control of their circumstances—I believe in democracy. Secondly, I’ve always been a teacher, I’ve always enjoyed writing, and I believe writing is a good way to educate people. And thirdly, I believe in health research—largely for self-preservation.
Self-preservation, how?
My main interest remains cancer research—mostly because I’m terrified of getting another cancer. I’ve had two and I don’t want to reach the stage of three strikes and you’re out. I’ve also had one heart attack, loads of side effects, loads of late effects, and I’m still here.
How did you start out?
This goes back to a long career as a patient representative, patient advocate, and patient research partner. I didn’t get involved in patient charities until 1998. Before that I was a housing officer working to get people who live in social housing involved in decisions about how to improve conditions such as damp and overcrowding. For nearly 10 years I’ve been co-editor in chief of Research Involvement and Engagement,1 a health and social care journal committed to delivering the patient or public voice in research.
What is Research Involvement and Engagement about?
Research, to us, is a means to an end. We want better healthcare, kinder cures, to reduce waiting times, and to produce more responsive health and social care services. This should be based on evidence, and we can help to provide that evidence. I wanted to tell the stories of how patients had helped research and to share these stories with other patients to help do it better. Most of the good stories about patient involvement are about people who have helped to do something that has had a direct impact on other patients.
What’s involved?
We publish around 100 papers a year. We are open access and every paper is reviewed by patients and has a plain English summary. We work either with clinicians who do their own writing or academic researchers who do their own writing—or occasionally with industry. More and more patients are getting good at reviewing, or sense checking, or proofreading, but actually sitting down and writing papers from scratch is not something we currently do or see as part of our role. Our skill is helping researchers improve the evidence base for better quality health and social care. We have a publisher contact for any problems around things like ethics. Other than that, all decisions are taken by me and academic co-editor in chief Sophie Staniszewska, who leads the patient and public involvement and engagement and experiences of care research programmes at University of Warwick Medical School.
What’s your circulation?
I don’t know those stats, I don’t know what our impact factor is, I don’t know what our time to publication is, or how it compares with anyone else. Please feel free to quote me on that, I’m not a proper editor in that sense. I’m more interested in things like how many papers are coming in, what they’re about, what the gaps are where I might be able to stir something up, how many papers have patient authors, if the plain language summary actually works, and if my friends and colleagues who want to read it can do so.
How do you know if you’re having an impact?
Anecdotally we know that people are reading papers about patient involvement that we’re publishing and it’s shaping the way they set things up or the way they go about doing things. For example, we’ve published papers where people experiencing homelessness have helped design a piece of research about it.
How have things changed over the years?
The biggest single change is that it used to be rare for papers to be co-authored by patients, now around 40% of our submissions include a patient author. Where patients are co-authors it’s usually because they’ve been heavily involved in the project. The range of topics is too many to list. The range geographically is increasing. We have a paper in review about barriers to patient involvement in Bulgaria, Kazakhstan, and Poland. Ten years ago it wouldn’t have happened. The pandemic changed the papers we get—suddenly we had a glut about how to involve people online. Similarly, we’re now publishing papers about how to involve people in an emergency.
Have you been involved in research yourself?
Yes, I’ve participated in four clinical trials. I took part in a trial (about anticoagulants) while I was on a hospital trolley having gone in for a routine angiogram and then collapsed on a treadmill. But I’ve never been told the results of any of those trials. I did find a journal paper for my cancer treatment—and after reading 18 pages, as far as I could understand it, I was still alive—which was good news.
Is not providing feedback to patients involved in trials a missed opportunity?
Yes, it’s huge. It’s something I get passionate about. There’s an opportunity to say to patients or their families, “You’ve helped other people, even if the results were negative, as we’ve now discovered that it’s a blind alley. So, take part in research, you can make a contribution to people you’re never going to meet—and you’ve helped medical knowledge.” The same is true for the use of our healthcare data. We can’t stop the scare stories around data but we should try to have more good news stories about their use by researchers, where we can tell people not a single patient was identified, no one’s insurance premiums were changed.
How do you see things developing?
I’d like to see more research reports on one sheet of paper—so two sides at the most—a compromise between the 18 page academic article and the 300 word plain English summary. Where you can actually put in a lot more information and you can talk about the results more than you can in a summary. I think we’ll see that in the drive to improve reporting of clinical trials to participants. It will start there and spread across other forms of health and social care research.
What other roles do you have?
I chair Use My Data (https://usemydata.org), which is the only patient led movement in Europe that is focused on the use of routinely collected healthcare data for research. I also chair an association of about 100 keen active volunteers who work in cancer research. I spend a lot of time teaching and lecturing. It has brought me a really interesting life, travelling across the world. I’ve now turned 65 and have mismanaged retirement!