Richard Smith: Patient organisations—the need to come together

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.