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Tessa Richards: The rise and reach of expert patients

17 Jan, 14 | by BMJ

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.

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  • Dr. Amy Price

    Tessa,
    This is such a wonderful exciting start to a great partnership. People tend to underestimate how knowledgeable and hungry for quality information patients can be. BMJ is the first journal to make true reviewer status available to patients and the public. The public learns through quality ,informed interaction. Just making decisions and speaking for patient rights is not enough. Thank you for taking this step. I just wrote a post on RISK and choice http://www.ithinkwell.org/do-the-power-of-risk-and-persuasion-equal-nothing-to-lose/ because hearing about risk is not enough, for understanding to come alive in the minds of the public so they are real participants and leaders in their own healthcare. I know many patient groups and will share what you are doing Thanks again and all the best with this endeavor

  • disqus_question_everything

    Patients are no doubt an invaluable source of information as they can focus on their particular malady. And no one cares about ones health more than the individual who is suffering.

    I also believe that there needs to be a sort of “checks and balances” system in health care. Health care is no different from any other industry and consumers need to become educated so they can make wise health decisions. They cannot depend on medical professionals to provide all the necessary information especially in today’s climate of the medical/pharmaceutical industrial complex. Who better to play the “checks and balances” role than patient experts?

    As someone who was harmed by an unnecessary treatment that is grossly overused and has medically documented adverse effects (hysterectomy), I doubt I would be extended an invitation to be a patient leader. However, what I have learned about the internal and external anatomical, hormonal/endocrine, and sexual functions of the uterus along with treatment alternatives would be invaluable to other women who are considering, or are told they need, this surgery.

  • Mitzi Blennerhassett

    Over the past 20 or so years, more and more patients like me have been speaking out, but accessing information has been extremely difficult and many have been made to feel like pariahs for daring to question or ‘make waves’. On many occasions it has seemed to me that the frustrations, injustices and disempowerment we experienced echoed those of the Women’s Rights Movement and other minority groups’ struggles (see ‘Towards the Emancipation of Patients: Patients’ experiences and the patient movement’, Charlotte Williamson, Policy Press).

    In 1996 I wrote about my cancer experiences in the Health Service
    Journal. I did not want to criticize, merely to raise awareness of
    the need for change. It had taken 6 years for me to find a platform
    for my voice. This was a time when patients were to be ‘seen but not heard’ and I expected some caustic responses. Sure enough, a grumbling letter complained,’Why don’t we hear about happy and satisfied patients for a change?’ I replied to the effect that only by invading each other’s safe spaces could we share issues and learn mutual respect and trust.

    At the same time, I also received a postcard from an oncologist, a
    member of the Kings Fund College, which, after so many years of
    vainly trying to get acknowledgement of unacceptable events, brought tears to my eyes. ‘Thank you for your Health Service Journal article’, it read. ‘ I think you will have changed the way in which many oncologists will act in the days to come. I will try to help those I meet to understand the need to share their humanity, and change my own behaviour.’ It ended, ‘My hand to you in love.’ I treasure that postcard to this day.

    Two years later, the bmj published another article about my cancer experiences and this was accompanied by doctors’ supportive commentaries. Change was incremental, but it was happening.

    The official call for ‘patient empowerment’, and then ‘patient
    partnership’ in the mid-1990s, meant patients had a valid voice. But how much are patients’ voices genuinely heard and used? Some user involvement/patient partnership groups have been effective, but others were established only under protest and have done little more than tick boxes to avoid penalties.

    People whose lives have been saved by medical care and
    interventions generally are not ungrateful, but if they had bad
    experiences they want to protect future patients from similar events; they want to improve health services; and many want compassion in healthcare to extend to those who deliver care
    (www.heartsinhealthcare.com).

    Much has been written and spoken about patient-centred care, but it takes more than rhetoric to change a culture. The bmj Patient Partnership Agenda brings a wonderful opportunity for change, (and though it might sound trite) – as I wrote in the Health Service Journal, for ‘Them and Us to become We’.

    Patients and patient advocates (including patient-centred clinicians) are patient no more.

    Mitzi Blennerhassett

  • chrys muirhead

    Unfortunately it has been my experience as a mental health activist and campaigner in Scotland that meaningful involvement can often be a meaningless tick-box exercise or focus groups rather than a place at the table and a chance to lead the agenda.

    In government strategy documents there has been much made of “experts by experience” and “recovery-focused practice” but in reality the power remains with the psychiatric professionals and remission is the mantra with a firm hold of the biomedical model of mental illness. Neuroscientist psychiatrists keep searching for the holy grail or schizophrenia gene, while labelling us treatment-resistant. While in fact it’s the drugs that don’t work and that each of is an individual requiring understanding and a listening ear.

    Much easier to silence the voices with mind-numbing medication rather than dealing with the issue of people’s emotional pain, a normal reaction to a crazy world.

  • Geektapestry

    Wrong term imho.
    Every ‘patient’ should be regarded as an expert patient – expert in how disease is expressing itself in their body Patient advocate is a much better descriptor of the job that you are expecting these people to do. Or Patient representative not an ‘expert’ patient – puts the onus on them being ‘perfect patients’.

  • CarlyRM

    I discuss a lot of these issues in my post “Should Patients Be Paid” http://blog.chronicarly.com/should-patients-be-paid/.

    Part of changing the status quo and helping patients gain the respect they deserve is realizing the important contributions
    patients make. The more difficult next step is to compensate them. I
    hope in the future your own organization can start paying the patients you (or your organization, as the case may be) utilize as experts.

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