Patient power: How one patient editor influences research

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…
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