I was reading a rather dispiriting news article about whether reviews of care had been written by patients or by NHS staff just as an email pinged in, inviting me to the annual Ann McPherson memorial lecture. If anyone knew how to cut through to what mattered about patient experience, it was Ann.
An Oxford GP for 30 years, Ann was committed to the belief that healthcare should be driven by patient experience and was instrumental in several of the strands of activity going on today in Oxford that are focused on gathering patient experience and feeding it back to the huge swathe of people who can benefit. Those groups range from other patients, their families and carers to medical students, doctors, policymakers and researchers. You name it, there aren’t many folk involved in the receipt or delivery of healthcare who aren’t somehow helped by the shared experiences of those who are ill.
And while researchers appear last on this list, I owe it to Ann to make sure that part of my work to involve patients in the research cycle in Oxford is about learning from their experiences of care. If we don’t know how they fare when on the receiving end of evidence-based medicine, can we truly hope to improve the evidence on which this medicine is based?
This isn’t of course a simple task: there is often a highly complex chain of events between a research idea and any application of its outcomes in the clinic. And of course my experience of care may well differ from yours, so we need to find ways to ensure that if we are to feed patient experience into research, we gather a range of views and not just those of the most vocal.
The work of Healthtalkonline, one of Ann’s legacies, does an amazing job of the latter (more on that in a future blog) and our work with the James Lind Alliance enables patients, carers and the health professionals who treat them to set the research agenda and ensure research ideas are grounded in the reality of the illness.
Ann died nearly three years ago, after experiencing both breast and pancreatic cancer. Many of my links with Oxford medical research were made with and through her, and the invitation to the lecture that bears her name was a reminder to focus on the stuff that matters. She encapsulated this beautifully when, reflecting on her motivation to set up Healthtalkonline, she said “I realised that I wanted to know how other people had managed with breast cancer and I didn’t just want to hear the stories of people who had ridden across France and “battled” with their cancer, but just the ordinary people.”