Patients sharing their experiences for mutual support and advice.By PatientsLikeMe
Stephen Heywood was diagnosed with ALS (also known as Motor Neurone Disease) at the age of just 29. A devastating debilitating condition, less than 4% of sufferers survive more than 10 years: Stephen was 37 when he died. In those eight years, he and his family searched for any new treatments, often operating an agonisingly slow trial-and-error basis. They concluded that for Stephen, and for thousands of others suffering from ALS, there had to be a better way.
Ben and James, Stephen’s brothers, founded Patients Like Me in 2005, a little more than a year before he died. They began with the aim of connecting patients and their families to share their experiences of ALS: symptoms, treatments, relationships, sources of support. The community quickly flourished, their team grew, and communities for a whole range of other life-changing conditions were added: by 2009, they had 45,000 active members. By late 2013 the site had 200,000 plus members, with references to over 2,000 conditions: the original ALS network, now with 4,500 members, is the largest of its kind in the world.
Crucially, the 200-strong Patients Like Me team has designed a scientific approach into what could just have been a specialist social network. Members are encouraged to share data (treatment history, side effects, hospitalisations, symptoms, disease-specific functional scores, weight, mood, quality of life) in standard ways: this data is then aggregated and presented back to them in a variety of ways. This both helps them to easily compare their experiences with the whole cohort who share their condition, and provides a rich and growing resource for use by medical researchers. Their in-house research team has published more than a dozen peer-reviewed papers and the site has been cited in more than 1,000 published scientific articles.
With the team developing new tools such as an ‘Open Research Exchange’ to help researchers integrate Patients Like Me data into their studies, and a ‘Clinical Trials Tool’ to alert members of any trials for which they would be eligible, the platform is continuing to innovate and work towards more accessible, responsive and effective healthcare.
Image 'Medical School' courtesy of University of Nottingham
Last updated: 09th of May, 2014