Collective Intelligence: Evidence Based Activism in Patients' Organisations

01.04.2015 Blog

On the 12th March, Nesta held an event titled 'Collective Intelligence: Evidence based activism in Patients' Organisations'. I was delighted when I saw that Nesta was hosting a discussion on these organisations, as it has long been my experience that these online forums are excellent sources of support, tips and crucially, evidence based information on how to manage rare and chronic conditions.  What I didn’t realise was the extent to which these groups are becoming part of the medical infrastructure, providing funding for trials and guiding the development of new drugs.

At the event  we heard first from Madeleine Akrich and Vololona Rabeharisoa of the ‘Centre de sociologie de l’innovation’ and learned about the academic work they had been doing analysing the activities of patient organisations . They had looked across four condition areas: rare diseases, childbirth, Attention Deficit Hyperactivity Disorder and Alzheimer's Disease. They found that these patient groups were heavily influenced by research and often engaged directly with scientists in order to request that academic findings be presented in more accessible ways to benefit their communities.  Moreoever, organisations had been known to commission scientific research themselves and also to host conferences bringing together academics, patients and doctors to advance understanding of rare conditions. On a day to day basis, patients' organisations were invaluable sources of information for patients themselves, often recommending questions or topics that should be discussed with doctors, and providing discussion boards where patients from around the world could connect and share stories.

We then heard from Nicholas Sireau, founder of the AKU Society and Findacure. He set up both organisations after his two young sons were diagnosed with alkaptonuria, a rare bone disease which has very few sufferers and consequently had received little medical attention. The AKU Society was however able to make the argument that alkaptonuria research had a disproportionate importance, as understanding how to treat alkaptonuria might well affect treatment choices for more common diseases such as osteoporosis. The AKU society raised money to fund a PhD student to study the disease and establish new clinical trials, and made the argument to the NHS that it was worth establishing a National Alkaptonuria Centre. In the course of doing this work, Nicholas was contacted by representatives from other rare disease groups, who were interested in understanding how they could emulate the success of the organisation.  It was for this reason that Nick set up findacure, and coined the term ‘fundamental diseases’ to illustrate how understanding rare diseases can help unlock insights into more common conditions.
Findacure today runs training workshops aimed at small and struggling patient groups, matches groups with expert mentors and has set up an online portal where these communities are able to connect and help each other. This is intended to stop each individual patient group from having to ‘reinvent the wheel’.

The example of Nick Sireau illustrates something striking about patient groups, which is that they are powered by a phenomenal drive and commitment which stems from personal investment in the issues at hand. They also convene a network of people who are powerfully united around the same goal, which gives them the ability to punch above their weight in terms of their size and resources. What is truly remarkable is the way that the internet has transformed the scope of these kinds of organisations, allowing patients from around the world to connect with each other, share stories and assist each other in wading through highly technical and specialized scientific papers and medical guidance. Although medical professionals have in the past been known to discourage patients from turning to ‘Doctor Google’, patient organisations are expert in helping their users through the maze of medical information available online. To the extent that chronic and rare disease patients are now being recognized as experts in their own conditions, patient organisations have a large role to play in making that a reality.

Photo from Seattle Municipal Archives via flickr under a Creative Commons License.