PatientsLikeMe
Encyclopedia
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?"
(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 passed away 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
.
(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). 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. 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.
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.
In 2008, a small Italian study was published suggesting that lithium carbonate could slow the progression of ALS. In response, hundreds of members of the site with the disease began taking the drug. 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. 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.
’ attitude,” 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
.
's 2010 list of Most Innovative Companies. It was also featured in a March 2008 New York Time Magazine article entitled "Practicing Patients", a May 2010 New York Times article entitled "When Patients Meet Online”, and in a December 2008 television segment with Sanjay Gupta
for the CBS Evening News
.
Founder's Story
PatientsLikeMe was co-founded in 2004 by three Massachusetts Institute of TechnologyMassachusetts Institute of Technology
The Massachusetts Institute of Technology is a private research university located in Cambridge, Massachusetts. MIT has five schools and one college, containing a total of 32 academic departments, with a strong emphasis on scientific and technological education and research.Founded in 1861 in...
(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
Stephen Heywood
Stephen Heywood was an American builder and self-taught architect, specializing in the renovation of old houses.He was diagnosed with ALS in 1998, at the age of 29...
, with amyotrophic lateral sclerosis (ALS)
ALS
ALS refers to amyotrophic lateral sclerosis, also known as Lou Gehrig's diseaseIt may also refer to:-Medicine:* Advanced life support, a level of medical training* Anterolateral system, part of the nervous system...
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
ALS Therapy Development Institute
The ALS Therapy Development Institute is a non-profit biotechnology company seeking effective treatments for amyotrophic lateral sclerosis . It is a registered 501 non-profit organization in the United States...
(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
Gene therapy
Gene therapy is the insertion, alteration, or removal of genes within an individual's cells and biological tissues to treat disease. It is a technique for correcting defective genes that are responsible for disease development...
and stem cell
Stem cell
This article is about the cell type. For the medical therapy, see Stem Cell TreatmentsStem cells are biological cells found in all multicellular organisms, that can divide and differentiate into diverse specialized cell types and can self-renew to produce more stem cells...
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 passed away 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
Pulitzer Prize
The Pulitzer Prize is a U.S. award for achievements in newspaper and online journalism, literature and musical composition. It was established by American publisher Joseph Pulitzer and is administered by Columbia University in New York City...
winning author Jonathan Weiner
Jonathan Weiner
Jonathan Weiner is a Pulitzer Prize-winning author of non-fiction books on his biology observations, in particular evolution in the Galápagos Islands, genetics, and the environment....
, as well as the documentary film So Much So Fast
So Much So Fast
So Much So Fast is a documentary written and directed by Academy Award nominees Steven Ascher and Jeanne Jordan. This film premiered in competition at the 2006 Sundance Film Festival, and won the Audience Award at the Boston Independent Film Festival....
, directed by Academy Award nominees Steven Ascher
Steven Ascher
Steven Ascher is an American independent director, producer and writer. He was nominated for an Academy Award and has received the Grand Jury Prize at the Sundance Film Festival among many other awards.-Films:...
and Jeanne Jordan
Jeanne Jordan
Jeanne Jordan is an American independent director, producer and editor. She was nominated for an Academy Award and has received the Grand Jury Prize at the Sundance Film Festival among many other awards.-Films:...
. The film was selected to premier in competition at the 2006 Sundance Film Festival
Sundance Film Festival
The Sundance Film Festival is a film festival that takes place annually in Utah, in the United States. It is the largest independent cinema festival in the United States. Held in January in Park City, Salt Lake City, and Ogden, as well as at the Sundance Resort, the festival is a showcase for new...
.
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 sclerosisMultiple sclerosis
Multiple sclerosis is an inflammatory disease in which the fatty myelin sheaths around the axons of the brain and spinal cord are damaged, leading to demyelination and scarring as well as a broad spectrum of signs and symptoms...
(MS), Parkinson's disease
Parkinson's disease
Parkinson's disease is a degenerative disorder of the central nervous system...
, fibromyalgia
Fibromyalgia
Fibromyalgia is a medical disorder characterized by chronic widespread pain and allodynia, a heightened and painful response to pressure. It is an example of a diagnosis of exclusion...
, HIV
HIV
Human immunodeficiency virus is a lentivirus that causes acquired immunodeficiency syndrome , a condition in humans in which progressive failure of the immune system allows life-threatening opportunistic infections and cancers to thrive...
, chronic fatigue syndrome
Chronic fatigue syndrome
Chronic fatigue syndrome is the most common name used to designate a significantly debilitating medical disorder or group of disorders generally defined by persistent fatigue accompanied by other specific symptoms for a minimum of six months, not due to ongoing exertion, not substantially...
, mood disorders, epilepsy
Epilepsy
Epilepsy is a common chronic neurological disorder characterized by seizures. These seizures are transient signs and/or symptoms of abnormal, excessive or hypersynchronous neuronal activity in the brain.About 50 million people worldwide have epilepsy, and nearly two out of every three new cases...
, organ transplantation, progressive supranuclear palsy
Progressive supranuclear palsy
Progressive supranuclear palsy is a degenerative disease involving the gradual deterioration and death of specific areas of the brain....
, multiple system atrophy
Multiple system atrophy
Multiple system atrophy is a degenerative neurological disorder. MSA is associated with the degeneration of nerve cells in specific areas of the brain. This cell degeneration causes problems with movement, balance and other autonomic functions of the body such as bladder control or blood pressure...
, and Devic's disease
Devic's disease
Neuromyelitis optica , also known as Devic's disease or Devic's syndrome, is an autoimmune, inflammatory disorder in which a person's own immune system attacks the optic nerves and spinal cord. This produces an inflammation of the optic nerve and the spinal cord...
(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. 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.
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 that it was releasing a tool which would show a list of trials from ClinicalTrials.govClinicalTrials.gov
ClinicalTrials.gov is a registry of clinical trials. It is run by the United States National Library of Medicine at the National Institutes of Health, and is the largest clinical trials database, currently holding registrations from over 93,000 trials from more than 170 countries in the...
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.
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.In 2008, a small Italian study was published suggesting that lithium carbonate could slow the progression of ALS. In response, hundreds of members of the site with the disease began taking the drug. 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. 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
Johns Hopkins University
The Johns Hopkins University, commonly referred to as Johns Hopkins, JHU, or simply Hopkins, is a private research university based in Baltimore, Maryland, United States...
, King’s College London, The Pew Internet & American Life Project, the University of Wisconsin and Palo Alto University.
Core Values
In its "About Us" section, the company describes four core values:- 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 profitNot just for profit
Not Just For Profit is a concept that captures an expanded set of values for defining and evaluating for-profit private sector organizations, not only by their ability to generate profit as is done traditionally, but also by their determination and success in driving a benefit for people and/or...
’ attitude,” 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
UCB (company)
UCB is a multinational biopharmaceutical manufacturing company headquartered in Brussels, Belgium.- History :UCB was founded on 18 January 1928 by Emmanuel Janssen, a Belgian businessman...
, Novartis
Novartis
Novartis International AG is a multinational pharmaceutical company based in Basel, Switzerland, ranking number three in sales among the world-wide industry...
, Sanofi, Avanir Pharmaceuticals and Acorda Therapeutics
Acorda Therapeutics
Acorda Therapeutics is a biotechnology company based in Hawthorne, New York. Acorda Therapeutics develops drugs to improve therapies that improve neurological function in people with multiple sclerosis, spinal cord injury and other disorders of the central nervous system...
.
Reception
The company was named as one of the "15 Companies that Will Change the World" by Business 2.0 and CNN Money as well as #23 on Fast Company (magazine)Fast Company (magazine)
Fast Company is a full-color business magazine that releases 10 issues per year and reports on topics including innovation, digital media, technology, change management, leadership, design, and social responsibility...
's 2010 list of Most Innovative Companies. It was also featured in a March 2008 New York Time Magazine article entitled "Practicing Patients", a May 2010 New York Times article entitled "When Patients Meet Online”, and in a December 2008 television segment with Sanjay Gupta
Sanjay Gupta
Sanjay Gupta is an American neurosurgeon and an assistant professor of neurosurgery at Emory University School of Medicine and associate chief of the neurosurgery service at Grady Memorial Hospital in Atlanta, Georgia....
for the CBS Evening News
CBS Evening News
CBS Evening News is the flagship nightly television news program of the American television network CBS. The network has broadcast this program since 1948, and has used the CBS Evening News title since 1963....
.