PatientsLikeMe

Profile of a patient with ALS

PatientsLikeMe is a data-driven social networking health site that enables its members to share condition, treatment, and symptom information in order to monitor their health over time and learn from real-world outcomes. Members are able to find and connect with patients like them, gain social support, and learn first-hand about ways to cope and manage. PatientsLikeMe aims to help patients answer the question: "Given my status, what is the best outcome I can hope to achieve, and how do I get there?"

History

Founder's story

PatientsLikeMe was co-founded in 2004 by three Massachusetts Institute of Technology (MIT) engineers: brothers Benjamin Heywood and Jamie Heywood and longtime family friend Jeff Cole. They were inspired to create a data-sharing social network for patients following the diagnosis of Benjamin and James’ brother, Stephen Heywood, with amyotrophic lateral sclerosis (ALS) five years earlier. A builder and self-taught architect, Stephen was 29 at the time of diagnosis, and the life expectancy for ALS averages between two and five years from diagnosis.

Following Stephen’s diagnosis, the Heywood family soon began searching the world over for ideas that would extend and improve Stephen’s life. In 1999, Jamie founded the ALS Therapy Development Institute (ALSTDI), the world’s first non-profit biotechnology company. The mission was to develop effective therapies for ALS, with an initial focus on gene therapy and stem cell treatments. In 2007, Jamie stepped down as CEO of ALSTDI and joined the Board of Directors. During his time at the helm, he raised $50 million to support the institute’s research efforts.

Stephen died in 2006 at the age of 37 when his ventilator accidentally disconnected during the night. He is survived by his wife, Wendy (Stacy) Heywood, and son, Alexander Heywood. Stephen, Jamie and their family have been chronicled in the book His Brother’s Keeper, written by Pulitzer Prize winning author Jonathan Weiner, as well as the documentary film So Much So Fast, directed by Academy Award nominees Steven Ascher and Jeanne Jordan. The film was selected to premier in competition at the 2006 Sundance Film Festival.

Growth

PatientsLikeMe launched its first online community for ALS patients in 2006. From there, the company began adding communities for other life-changing conditions, including multiple sclerosis (MS), Parkinson's disease, fibromyalgia, HIV, chronic fatigue syndrome, mood disorders, epilepsy,^[1] organ transplantation, progressive supranuclear palsy, multiple system atrophy, and Devic's disease (neuromyelitis optica). By October 2009, the number of registered users had grown to more than 45,000.

In April 2011, the company expanded its scope and opened its doors to any patient with any condition.^[2] By June 2011, PatientsLikeMe had hit a new milestone of 100,000 members. Today the website covers more than 1,200 health conditions, with new members joining daily from the US and other countries around the world. Of note are the more than 4,500 ALS members, who have helped make PatientsLikeMe’s flagship community the largest online population of ALS patients in the world.

Products and services

Online data-sharing platform

PatientsLikeMe allows members to input real-world data on their conditions, treatment history, side effects, hospitalizations, symptoms, disease-specific functional scores, weight, mood, quality of life and more on an ongoing basis. The result is a detailed longitudinal record – organized into charts and graphs – that allows patients to gain insight and identify patterns. The data-sharing platform is designed to help patients answer the following question: “Given my status, what is the best outcome I can hope to achieve, and how do I get there?” Answers come in the form of shared longitudinal data from other patients with the same condition(s), thus allowing members to place their experiences in context and see what treatments have helped other patients like them.

Clinical trial awareness

On June 9th, 2011, PatientsLikeMe announced ^[3] that it was releasing a tool which would show a list of trials from ClinicalTrials.gov to members of their system, tailored to their condition and demographics. The list of available trials is refreshed each night from the open data from ClinicalTrials.gov, which is released in the public domain. Members of the site can search for trials for which they are eligible free of charge; the company also offers a commercial service to actively message potential participants for clinical trials.^[4]

Scientific work

PatientsLikeMe has an in-house team of research scientists led by Research & Development Director Paul Wicks, PhD. Since 2006, the PatientsLikeMe research team has authored more than a dozen peer-reviewed published scientific articles. In addition, PatientsLikeMe has been cited by others in more than 1,000 published scientific articles.^[5]

In 2008, a small Italian study was published suggesting that lithium carbonate could slow the progression of ALS. ^[6] In response, hundreds of members of the site with the disease began taking the drug. ^[7] Using the self-reported data of 348 ALS patients and taking just nine months to complete, PatientsLikeMe conducted a study which demonstrated that lithium did not slow the progress of the disease. ^[8] The team suggested that online collection of patient self-report data was no substitute for randomized placebo-controlled trials, but might be a useful new form of clinical research in certain circumstances.

In keeping with the company’s Openness Philosophy, PatientsLikeMe has several collaboration partnerships with research and academic institutions. To date, the company has shared patient data with researchers including Oxford University, the Robert Packard Center for ALS Research at Johns Hopkins University, King’s College London, The Pew Internet & American Life Project, the University of Wisconsin and Palo Alto University.

Corporate affairs and culture

Core values

In its "About Us" section, the company describes four core values:^[9]

• Honor the trust patients place in us - Patients trust the company to protect their private health data and to use it to advance knowledge of their disease.
• Transparency - The company aims for “no surprises.” In an effort to ensure transparency, PatientsLikeMe discloses its business partnerships, what it does with patient data and how the company makes money.
• Openness - The company believes that sharing health information openly has the potential to benefit patients.
• Create “Wow” - This is the goal for what patients should feel when they visit PatientsLikeMe.com. Every sixth week, the engineering team holds a “Wow Week” to experiment and innovate freely in developing new site features, similar to Google's "20% time".

Business model

Describing itself “a for-profit company with a ‘not just for profit’ attitude,”^[10] PatientsLikeMe does not allow advertising on its site. Instead, the company has based its business model around aligning patient interests with industry interests. Namely, this refers to the shared goals of accelerated clinical research, improved treatments and better patient care. To achieve these goals, PatientsLikeMe sells aggregated, de-identified data to its partners, including pharmaceutical companies and medical device makers. By selling the information that patients share about their conditions, PatientsLikeMe aims to help partners in the healthcare industry better understand the real-world experiences of patients as well as the real-world course of disease. Some of PatientsLikeMe’s past and present partners include UCB, Novartis, Sanofi, Avanir Pharmaceuticals and Acorda Therapeutics. ^[11]

Reception

The company was named as one of the "15 Companies that Will Change the World" by Business 2.0 and CNN Money^[12] as well as #23 on Fast Company (magazine)'s 2010 list of Most Innovative Companies.^[13] It was also featured in a March 2008 New York Time Magazine article entitled "Practicing Patients",^[14] a May 2010 New York Times article entitled "When Patients Meet Online”,^[15] and in a December 2008 television segment with Sanjay Gupta for the CBS Evening News.^[16]

References

1. ^ Marketwire, UCB and PatientsLikeMe Partner to Give People With Epilepsy a Voice in Advancing Research Jun 15, 2009 07:00 ET
2. ^ PatientsLikeMe Calls All Patients With Any Condition to Join
3. ^ Press release of new ClinicalTrials.Gov tool
4. ^ PatientsLikeMe Information for industry partners page on clinical trial awareness
5. ^ Google Scholar search for PatientsLikeMe
6. ^ Fornai, F.; Longone, P.; Cafaro, L.; Kastsiuchenka, O.; Ferrucci, M.; Manca, M. L.; Lazzeri, G.; Spalloni, A. et al (2008). "Lithium delays progression of amyotrophic lateral sclerosis". Proceedings of the National Academy of Sciences 105 (6): 2052–2057. doi:10.1073/pnas.0708022105. 
7. ^ Brownstein CA, Brownstein JS, Williams DS, Wicks P, Heywood J (2009). "The power of social networking in medicine.". Nat Biotechnol 27 (10): 888–890. doi:10.1038/nbt1009-888. PMID 19816437. 
8. ^ Wicks P, Vaughan TE, Massagli MP, Heywood J (2011). "Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm". Nat Biotechnol 29 (5): 411–414. doi:10.1038/nbt.1837. PMID 21516084. 
9. ^ PatientsLikeMe Corporate FAQ
10. ^ PatientsLikeMe Corporate FAQ
11. ^ PatientsLikeMe Partners Page
12. ^ PatientsLikeMe : Press
13. ^ Fast Company's 2010 Most Innovative Companies
14. ^ PatientsLikeMe - Medicine - Doctors - Computers and the Internet - New York Times
15. ^ When Patients Meet Online
16. ^ Social Networking For Medical Patients - CBS Evening News with Katie Couric

External links

• PatientsLikeMe
• The Value of Openess
• New Scientist Article 'How the MySpace mindset can boost medical science' Issue dated May 15, 2008
• Newsweek Article 'Power to the bottom' Issue dated September 15, 2008