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Richard Smith: Patient organisations—the need to come together

21 Nov, 12 | by BMJ

Richard Smith“There is no kingdom too small for a doctor to be king of,” is one of my favourite sayings. Last week at a workshop for patient organisations organised by the Medtronic Foundation I learnt that it may be even more true for patient organisations.

I’m a big supporter of patient organisations. They do an important job of supporting patients, advocating for them, supplying information and services, funding research, and raising public awareness. They are, however, mostly poorly funded and often small. This is largely a cottage industry that is professionalising only slowly.

One of the conversations that went on at last week’s workshop was about balancing the need to advocate for patients with particular diseases against advocating for patients generally. Most patient organisations seem to be related to particular diseases, and often there may be several organisations for one disease. Sometimes these have very different views on the diseases and their management and may even hate each other. In the US celebrities who get diseases often start their own charity rather than work with one that already exists.

Organisations for closely related conditions can find it hard to work together because they compete for funds. I heard stories of groups of patient organisations gathering to meet with funders and then squabbling with each other as they tried to grab funds. Another closely related set of organisations came together to produce a report for government, but couldn’t agree on priorities and so each produced its own report. Then a major gulf exists between patient organisations, which usually adhere to the medical model, and the disability organisations that take a rights based approach. (I wondered if that last sentence was too much jargon, but am I out of touch in thinking that phrases like “the medical model” and a “rights based approach” are now familiar to even the crustiest oldtimer?) “After a lifetime in the voluntary sector I wouldn’t do it again,” said one woman, “We’re hopeless at working together.”

There are, of course, great advantages to small organisations close to their customers or members’ needs and with their own distinct identity. They can be frugal, flexible, and fast moving. Often, however, they are not. Rather they are under resourced, amateur, and unwilling to change. Even something as simple as creating a website can become a major challenge.

Big benefits can flow from coming together, and that’s what tends to happen with businesses. Bigger organisations can do more and are more likely to be listened to. Politicians will ask patient organisations “Are you the only one?” If the answer is no they are less keen to listen to them. Having a separate patient organisation for each disease is a nightmare for governments, which is why they tend to try to push them together. Then having many patient organisations built around individual diseases weakens the voice of patients as a whole. The same argument applies to doctors, but most countries at least have a medical association that can make some claim to speak for all doctors, and we do have the World Medical Association, albeit a very flawed organisation.

The United States, where generally patient organisations seem to be better funded and more professional, has the AARP (formerly the American Association of Retired Persons), which has some 40 million members and tremendous political clout. The head of the AARP is sometimes described as the second most powerful person in Washington. It inevitably has an interest in health as older people are the main consumers of healthcare and can speak and lobby independently of particular disease groups. Organisations of older people in other countries don’t seem to have the same influence, and powerful voices who can speak for all patients are lacking.

The need to come together has been recognised within patients’ organisations and many disease groups—like those for Parkinson’s disease—have come together at a European and even global level, and there are organisations like the Long Term Conditions Alliance. The International Alliance of Patient Organisations was created to speak to WHO. It has over 200 organisations in the alliance and claims to speak for over 300 million patients. And Europe has the European Patients’ Forum that has 55 members and works with the complex European political structure. Both were described as “umbrella organisations of umbrella organisations,” and I’d never before heard the phrase “umbrella organisation” so many times in one day. An umbrella organisation sounds like something weaker than a federation.

These are not, however, powerful bodies, and I was left with the feeling that much could be gained by patient organisations merging and working together much more closely.

Richard Smith was the editor of the BMJ until 2004 and is director of the United Health Group’s chronic disease initiative.

Competing interest: RS facilitated two sessions at the workshop, was paid a fee, and had his expenses paid by the Medtronic Foundation. The foundation also gives funding to several of the centres that are funded by the National Heart, Lung, and Blood Institute and the UnitedHealth Chronic Disease Initiative, which RS directs.

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  • http://www.facebook.com/robert.pleticha Robert Pleticha

    Hi, could someone please explain the sentence:

    “And Europe has the European Patients’ Forum European that has 55 members and works with the complex European political strcture.”

    Did anyone bother to proofread or spellcheck Richard’s article?

    I know the European Patients’ Forum (EPF) but what is European Patients’ Forum European?

    Also, if you are going to end on an argument like, “These are not, however, powerful bodies, and I was left with the feeling
    that much could be gained by patient organisations merging and working together much more closely.”

    …you could at least spell structure correctly in the sentence prior.

    Why don’t you see the need for IAPO and EPF? Not very well developed argument there.

  • JDobson

    Hi Robert,
    I have corrected the typo. Thanks for pointing it out.

    Juliet, BMJ blogs editor.

  • Paul Nuki

    An excellent post, picking up a v important issue.

    I agree that in the US consumer views on health are much better represented via the likes of AARP. But we also have such organisations here in the Consumers Association (Which?), Saga, Citizens Advice etc. Like the AARP they also have scale and expertise in consumer advocacy.

    The real difference in the UK, I think, is that the health establishment does not invite these organisations to the table. It feels much more comfortable with small expert patient groups or disease specific charities (often with a medic at or near the helm). These groups are “informed” in the diplomatic lingo and you see the same ones over and over again on expert groups, boards etc. If a genuine ‘lay’ person must be found, it’s normally a general do-gooder rather than a challenging consumer advocate of any sort.

    If the NHS really wants to put the patient/consumer first, its going to
    have to get properly engaged with groups that have quite different views to its own.

  • Paul Nuki

    An excellent post, picking up a v important issue.

    I agree that in the US consumer views on health are much better represented via the likes of AARP. But we also have such organisations here in the Consumers Association (Which?), Saga, Citizens Advice etc. Like the AARP, they also have scale and expertise in consumer advocacy.

    The real difference in the UK, I think, is that the health establishment does not invite these organisations to the table. It feels much more comfortable with small expert patient groups or disease specific charities (often with a medic at or near the helm). These groups are “informed” in the diplomatic lingo. If a genuine ‘lay’ person must be found, it’s normally a general do-gooder, rather than a consumer advocate of any sort.

    If the NHS really wants to put the patient/consumer first, its going to
    have to get properly engaged with groups that have quite different views to its own.

  • http://twitter.com/AfternoonNapper Afternoon Napper

    The suggestion to consolidate patient groups fails to take into account the fact that different organizations exist to serve similar patient populations but with different missions, methods, and leadership — on purpose. Patients should have options regarding who represents them and options to satisfy what individual patients need. Komen is a great example to use in this discussion, as the organization has now been shown to have faulty leadership and a selective mission. Umbrella organizations are unable to provide specialized services. Smith might evaluate his role with United Health Group’s chronic disease initiative to see that chronic diseases are so varied and patients under the chronic disease umbrella do not all have the same needs in managing their care — perhaps a disease’s primary issue is pain, perhaps it’s fatigue, perhaps it’s lack of medication treatments. So one umbrella organization can adequately address all these needs for all the various chronic diseases with knowledgeable staff for each disease and its related problems? I’d love to see that organization formed — as it is, I get my support from a variety of organizations with a variety of missions, methods and leadership. The point is helping those in need how they want to be helped and where they want to be helped.

  • Jason Maude

    This article highlights a very important point and one that the single disease charities, and DH for that matter, don’t seem to get. If a single disease charity is very successful at raising awareness of its disease, then it could well cause misdiagnosis by causing the clinician to inappropriately consider that disease rather than another one. Each disease awareness campaign just becomes diagnosis of the week and is largely forgotten about when the next one comes along. The clinician needs to be reminded of diseases to think about that are appropriate for their patient during the consultation. The solution is to make compiling and documenting a differential diagnosis mandatory. This can now be done in the time available using modern web based diagnosis checklist systems such as Isabel (www.isabelhealthcare.com).

  • Angela Coulter

    I agree with the thrust of your argument, Richard, but you are a bit out of date on the situation in England. The Long Term Conditions Alliance (LTCA) is no more. Since 2008 about 150 patient organizations, including LTCA members, came together to form National Voices. This is now a very effective and professional lobby group under the dynamic leadership of Jeremy Taylor. They speak out on a broad range of issues with a coherent and powerful voice that is taken seriously at all relevant top tables.

  • http://www.facebook.com/graham.findlay.18 Graham Findlay

    As a service-user/patient who attended the same event that Richard rather brillianty moderated (I’m that rare beast, someone who actually has the medical condition/disability/impairment that everyone else was theorising and talking around), I found this blog really interesting. A parallel situation exists around “disability” (as distinct from disease). Charities squabble for diminishing funding; charities and right based groups hate each other; partnerships, mergers and uneasy alliances are formed but are often very unequal; umbrellas of umbrella bodies exist but representation is incredibly blurred and murky; the divisive medical model of disability tends to still predominate, while lip service is rhetorically given to the more unifying social model of disability. All this does not create the necessary pre-conditions for coming together and working more closely to promote, for example, disability rights or better service delivery. For me coming together should be under the banner of disabled people’s or patients rights – at the moment, it’s divide and rule, with no real winners – certainly not patients or disabled people.

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