PatientsLikeMe now has more than 200, 000 patients on the platform and is tracking 1, 800 diseases.
FORBES: PatientsLikeMe Is Building A Self-Learning Healthcare System
PatientsLikeMe's president, Ben Heywood, disclosed the break-in to the site's 70, 000 members in a blog post.
By the afternoon, PatientsLikeMe had located three other suspect accounts and shut them down.
Fast Company magazine named PatientsLikeMe one of the most innovative companies in the world.
Jamie Heywood, chairman and co-founder of PatientsLikeMe, said the idea for the new study came from patients.
WSJ: ALS Study Falls Short, But Use of Social Media Holds Promise
It needs to be better than Nike or MapMyRun or PatientsLikeMe.
"We're a business, and the reality is that someone came in and stole from us, " says PatientsLikeMe's chairman, Jamie Heywood.
He also reminded users that PatientsLikeMe also sells its data in an anonymous form, without attaching user's names to it.
At PatientsLikeMe, there are forums where people discuss experiences with AIDS, supranuclear palsy, depression, organ transplants, post-traumatic stress disorder and self-mutilation.
PatientsLikeMe was launched in 2004 by family members of an architect who had contracted ALS five years earlier at the age of 29.
FORBES: PatientsLikeMe Is Building A Self-Learning Healthcare System
PatientsLikeMe offered instead to run a more rigorous observational study with members of the network to increase chances of getting a valid result.
WSJ: ALS Study Falls Short, But Use of Social Media Holds Promise
PatientsLikeMe.com is just one of many such communities, started in 2004.
PatientsLikeMe tries to get patients to quantify whatever they can about the diseases they have, scoring side effects like nausea and mood not usually captured as a number.
FORBES: PatientsLikeMe Is Building A Self-Learning Healthcare System
Two conventional on-going ALS studies are designed to see if lithium has a very small effect on survival, something the PatientsLikeMe study wouldn't be able to pick up.
WSJ: ALS Study Falls Short, But Use of Social Media Holds Promise
Like many websites, PatientsLikeMe has software that detects unusual activity.
On May 18, PatientsLikeMe sent a cease-and-desist letter to Nielsen.
More than 4, 300 patients are on the PatientsLikeMe ALS site, where they frequently share information on how their disease is progressing and strategies they are using to fight it.
WSJ: ALS Study Falls Short, But Use of Social Media Holds Promise
To address the concern, PatientsLikeMe developed an algorithm that matched 149 patients taking lithium with at least one other ALS patient on the site who didn't take the drug.
WSJ: ALS Study Falls Short, But Use of Social Media Holds Promise
Jamie Heywood founded PatientsLikeMe after his brother was diagnosed with the neurodegenerative disease ALS. Patients can share information about their experience and use the network as a resource.
FORBES: Why Digital Health Is Different From Any Other Business
It is our way or it is not studied at all, '' said Dr. Wicks, the research and development director at PatientsLikeMe, a closely held health-data sharing company in Cambridge, Mass.
WSJ: ALS Study Falls Short, But Use of Social Media Holds Promise
"It was a bad legacy practice that we don't do anymore, " says Dave Hudson, who in June took over as chief executive of the Nielsen unit that scraped PatientsLikeMe in May.
The neuropsychologist from the U.K. (and a 2013 TED Fellow) is research director for PatientsLikeMe, a social network that is producing some of the most compelling clinical data the health care industry has ever seen.
FORBES: PatientsLikeMe Is Building A Self-Learning Healthcare System
In 2005, Jamie and another brother, Benjamin, founded a website called PatientsLikeMe, which seeks to empower patients suffering from specific diseases, offering not just support but also an opportunity to share data and evaluate potential treatments.
FORBES: Finding beauty and hope at a personalized medicine conference
In online physician communities such as Sermo and WebMD, doctors can reach out to colleagues for help in difficult cases, and in patient communities such as PatientsLikeMe and CureTogether, patients can share information about their symptoms.
Nielsen says it was unable to remove the scraped data from its database, but a company spokesman later said Nielsen had found a way to quarantine the PatientsLikeMe data to prevent it from being included in its reports for clients.
Merit Cudkowicz, an ALS researcher at Harvard Medical School who was an investigator on a standard lithium clinical trial, said social network-generated data can offer valuable insights, but she cautioned that the PatientsLikeMe study was not a substitute for more rigorous studies.
WSJ: ALS Study Falls Short, But Use of Social Media Holds Promise
应用推荐