Congratulations to our R&D team here at PatientsLikeMe for its most recent paper published in Nature Biotechnology (“Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm”). The full paper has been made available by Nature so you can read the results and access all of the supplemental data and figures.
Below are links to some of the media coverage about the paper, as well as a link to our own news release announcing the study results.
A special thank you to all of the ALS patients on our site for sharing the data that helped create this new insight and accelerate discovery like its never been done before. Now that we’re open to all patients with any condition, we know your sharing will inspire the masses to share and learn together.
Marketwire (our news release)
PatientsLikeMe Social Network Refutes Published Clinical Trial
The Wall Street Journal
ALS Study Shows Social Media’s Value as Research Tool (paper)
The Future of Social Network-Based Trials (blog)
Boston Business Journal
PatientsLikeMe hits ALS study
PatientsLikeMe study challenges prior ALS claims
- Filed Under: ALS, Conditions, One for All, Patient Experiences, Research
- Tags: ALS patients, lithium, Lou Gherig's Disease, Media Coverage, Nature Biotechnology, news release, paper, patient-matching algorithm, PatientsLikeMe, published research, R&D, wall street journal
In response to the Wall Street Journal article published last week, we’ve had a lot of great discussions about the role of honesty and transparency. Transparency is about you – members of the PatientsLikeMe community – knowing how we make money and what we do with the data you’ve entrusted to each other and PatientsLikeMe.
To continue the dialogue, we’re writing this blog to respond to a few recent articles that have suggested we do something other than what we’ve said. See BNET’s “PatientsLikeMe Is More Villain Than Victim in Patient Data ‘Scraping’ Scandal” and Internet Evolution’s “Personal Data Mining: Government & Business Share Blame” (since corrected).
To start, the characterization as villain is nicely hyperbolic for a headline, but inaccurate. Villains are dishonest. As a company, we strive to be honest and transparent – both are key parts of our Core Values as an organization. To that end, let us dig in on a few of your recent follow-up questions:
- Does PatientsLikeMe sell our identifying data (like name, photo, bio, etc.)?
- How does PatientsLikeMe make money? We take the information patients share about their experience with the disease, and sell it in a de-identified, aggregated and individual format to our partners (i.e., companies that are developing or selling products to patients). These products may include drugs, devices, equipment, insurance, and medical services. We do not rent, sell or share personally identifiable information for marketing purposes or without explicit consent. Because we believe in transparency, we tell our members exactly what we do and do not do with their data. (Read more)
- Is this a “privacy scandal”? To us, it’s not a discussion about whether or not health information should be private. (Don’t get us wrong – that’s an important discussion too, but we’re pretty clear on where we stand on that – see our Openness Philosophy). The issue here is that Nielsen was not given consent of the patients, nor PatientsLikeMe, to scrape information from our site. As we’ve said before, we believe this scraping incident was a violation of our User Agreement and a violation of patients’ trust.
Our site wouldn’t exist if we had to “persuade” you, the patient, to share your data. Many of you find value in sharing; value in that level of openness. What you should expect in return is a level of transparency about what we will and won’t do with your information. We hope we do a good job of providing that transparency. What do you think?
- Filed Under: ALS, Chronic Fatigue Syndrome, Epilepsy, Fibromyalgia, HIV/AIDS, Mental Health, Multiple Sclerosis, Organ Transplants, Parkinson's Disease, Patient Experiences, Rare Diseases
- Tags: Ben Heywood, BNET, data scraping, FAQ, honesty, how we make money, jamie heywood, Openness, PatientsLikeMe, privacy, privacy scandal, scraping, transparency, victim, villain, wall street journal, what data do we sell