Tessa Richards: The rise and reach of expert patients

Tessa RichardsIn the Victorian era the patients who acquired public profiles tended to be doubly disadvantaged. Think Joseph Merrick. His fame as the “Elephant Man” stemmed from others exploiting his disfiguring disorder (Proteus syndrome?) for financial gain. Now patients are becoming well known less for shouldering disease burdens so much as using their experience to help others. A handful have achieved celebrity status…….

They give TED talks, publish books, and are run off their feet meeting calls to speak at medical meetings. Convenors are beginning to recognise the value, and all should, of ticking the “patient included” box.

It’s not hard to see why patients become passionate advocates for others. The insight gained from experiencing prolonged physical and mental ill health motivates you to help fellow patients in a way that nothing else can.

As the BMJ gears up for its first patient partnership workshop next week we have been humbled and inspired by the enthusiasm of the many patients and patient advocates who have come forward to work with us. We see their insights, and those of an army of patients who we should all listen to, as crucial to developing a strategy to help doctors, and the health systems in which they work realise the challenging goal of partnership.

Our initial steps include patient peer review of research papers (randomised controlled trials) and some analysis papers, and we are actively seeking patients to join our growing database of patient reviewers to help us do this. We will also be getting the patient’s voice into the journal more often and seeking their input into educational articles.

Patients bring an expertise to the table that can’t be found in the corridors of academia or the manager’s office. Many of those who live with chronic disease slowly and painfully acquire knowledge which over time exceeds that of many of the health professionals they intermittently meet. A recent, much tweeted (553 times) paper in BMJ Open entitled, “What happens when patients know more than their doctor?” explores this issue.

If you have a rare disease none of the doctors you are likely to encounter will begin to match the expertise lodged in patient organisations. Some doctors admit, as Jonathan Richards, a Welsh GP, told me last week, that it’s the patients not the doctors, who provide the information you need to live with chronic disease. “When I got diabetes, “ he said, “the people I learnt most from were fellow patients.”

First hand experience of disease teaches a lot. But empowering patients to act as effective advocates for others is important, says David Gilbert, co- director of Patient Leaders (@PatientLeaders)

At a meeting at the Kings Fund last November he explained how after recovering from six years in a psychiatric hospital, where he often “wanted to die,” he started to volunteer to sit on committees to give the patient’s perspective. It was a frustrating business. “There was no clarity of my role, no training, and no support, and for the most part the activity was tokenistic” he said.

His frustration with the failure of patient and public involvement in health care decision making to move away from the “ you give us your views and we decide” model led him to set up his organisation to train patient leaders. Skilled patient leaders are needed, he argues , if (as they increasingly are) being invited to sit round the table with doctors and managers and act as equal partners. Moves to institute “patient centred care” that are not informed by experienced and effective patient leaders will lead nowhere, he argues.

In the UK, the Expert Patient Programme has no shortage of people who undergo training to improve their self management skills and then go on to support others, mostly on a voluntary basis. But for patients whose passion to help others has led them to assume leading roles , the time and effort they put in are poorly recognised.

Ailsa Bosworth, chief executive of the National Rheumatoid Arthritis Society is someone I particularly admire. Over the years she has undergone a mind boggling number of surgical procedures for her own disease and worked ceaselessly to improve the standard of care for other RA patients. She regretfully declined to join the BMJ’s patient panel. She is just too busy, and chronic illness saps strength.

The more you talk to expert patients the more you hear these views. Paraphrasing Bosworth and Gilbert, the collective message is “We are called on incessantly to provide viewpoints, comment on weighty reports and guidelines, attend meetings, sit on committees, and mostly we are expected to do all this on a voluntary basis. We often feel below par, so we have to draw the line somewhere.”

Some patient leaders argue, and it’s hard to disagree with them, that their expertise should not only be recognised by health systems but rewarded too. They are motivated by altruism but feel the demands being put on them verge on exploitation.

Several of the patients coming to talk to us next week have made their own arrangements to travel to BMA House from overseas. All are giving us their time for free. How many medical or managerial experts would be happy to do the same?

Tessa Richards is senior editor/patient partnership, BMJ.