PatientsLikeMe
| Type of business | Private |
|---|---|
|
Type of site
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Personalized health network |
| Founded | 2004 |
| Headquarters | Cambridge, Massachusetts, United States |
| Key people | Ben Heywood James Heywood Martin Coulter Michael Evers Ed Godber Jason Johnson Sally Okun Daphne Psacharopoulos Paul Wicks |
| Slogan(s) | "Live better, together" |
| Website | patientslikeme.com |
| Launched | October 10, 2005 |
| Current status | Active |
PatientsLikeMe was inspired by the life experiences of Stephen Heywood, diagnosed in 1998 at the age of 29 with amyotrophic lateral sclerosis (ALS), or Lou Gehrig’s disease. The company was founded in 2004 by his brothers Jamie and Ben Heywood and long-time family friend Jeff Cole. Today PatientsLikeMe is a personalized health network that helps people find new options for treatments, connect with others, take action to improve their outcomes and contribute data for research. The company has worked with most pharmaceutical companies and government organizations to bring the patient voice to research, development and public policy. The site has more than 500,000 members. The company has published more than 100 research studies.
After being diagnosed with ALS, Stephen's family founded a non-profit, ALS Therapy Development Institute, in an attempt to slow his disease and treat his symptoms. However, the slow pace of research and the trial-and-error approach was time-consuming and repetitive. They realized that Stephen’s experience was like that of other patients around the world who often have specific questions about their treatment options, and about what to expect. PatientsLikeMe helps patients connect with others who know firsthand what they are going through to share advice and resources. Through a health profile made up of structured and quantitative clinical reporting tools, members are able to monitor their health between doctor or hospital visits, document the severity of their symptoms, identify triggers, note how they are responding to new treatments, and track side effects. They have the opportunity to learn from the aggregated data of others with the same disease and see how they are doing in context with others. Members of the site use social tools such as forums, private messages, and profile comments to give and receive support from others, a support mechanism that has been shown to help improve their management and perceived control.
PatientsLikeMe launched its first online community for ALS patients in 2006. From there, the company began adding other communities for other life-changing conditions, including multiple sclerosis (MS), Parkinson's disease, fibromyalgia, HIV, chronic fatigue syndrome, mood disorders, epilepsy,organ transplantation, progressive supranuclear palsy, multiple system atrophy, and Devic's disease (neuromyelitis optica). The company's approach was to read the scientific literature and listen to patients to identify outcome measures, symptoms, and treatments that were important to patients and could be accurately reported. For example, the development of the MS community involved the development of a new patient reported outcome measure, the MS Rating Scale (MSRS), to ensure patients could accurately determine how their condition was progressing over time. However, building one community at a time was a slow process and the company risked being overly narrow in focus while excluding more than 5,000 patients who had requested new communities as of December 2010.
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