The Value of Openness: The PatientsLikeMe Blog

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.

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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

FierceBiotech IT
PatientsLikeMe study challenges prior ALS claims

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.)?
  No. We’ve asked for a correction in the Internet Evolution article because their statement about scraping the names you use to sign up for the site is incorrect. In the BNET article, the author cited our Privacy Policy, which indicates what data patient members can share on their health profiles at PatientsLikeMe.  This is not the same as the data we sell.  In addition to linking our partners site right off our homepage (where we list out the products sold to partners), we also call out “how we make money” on the front page.  Part of this FAQ was cited, but the very important point about “personally identifiable information” is below:
  • 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.

• Isn’t PatientsLikeMe doing the same thing as Nielsen? In addition to our User Agreement and Privacy Policy, we also have a moral obligation to our communities to do the right thing. In this case it means: 1) having this dialogue openly and honestly; 2) being selective about the projects we work on and our partners; and 3) contractually obligating our partners not to ‘re-identify’ our patients with our data or other data (which would mean a pharma company would be taking on liability using a service like PeekYou in conjunction with PatientsLikeMe data).

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?

Journalist Julia Angwin of the Wall Street Journal just published an article describing how a major media monitoring company, Nielsen BuzzMetrics,  scraped our forum last Spring.  (See my previous blog post on the incident - “Transparency, Openness and Privacy”)

Julia’s piece includes details regarding how this incident happened, how we (and you) responded and more.  We are very excited about this article.  Having a rigorous debate about transparency, openness and privacy is critical to us achieving the trust we want to have with you, our patients.

What Nielsen did was clearly a violation of our User Agreement.  However, we believe this incident (and this article) have spurred an important ongoing discussion about what is right, just and appropriate regarding how companies operate in this new networked world.  As I said to Julia, this is a new frontier.  We also believe there’s a lot for everyone to learn from this experience, especially around how to put patients first.

Read Julia’s piece and tell us what you think.

I came across this Wall Street Journal article earlier this week which details how patients with life-changing illnesses are using online services such as EmergingMed to help them enroll in clinical trials. The article points out that only 3% of adult cancer patients participate in trials, citing lack of awareness as a crucial factor. They write:

“studies show that the more likely culprit is ignorance… 85% of cancer patients were either unaware or unsure at the time of their diagnosis that participation in clinical trials was an option.”

In addition, there are also systematic flaws in the disjointed way that trials take place which makes it difficult to get accepted into a trial and can make participation unsatisfying even if you do. Say you’ve got ALS (Lou Gehrig’s disease or Motor Neurone Disease), a progressive and incurable life-changing illness and you’re being treated at a specialist centre that runs a lot of clinical trials. Here’s a few scenarios that could happen:

1. The Drug X trial is full before you can participate. Even if you’re suitable for a trial, it’s a matter of chance as to whether you’ll be seen at the hospital during their recruitment window. National, online databases which store shared medical data prospectively could help ensure a fairer system which gave equal opportunity to eligible patients.

2. The Drug Y trial is only looking to recruit a specific subset of patients so you’re not eligible. Maybe you’re eligible for a trial in the next state and they’re desperate for more participants; national trial registries would open up access and make it easier for researchers to recruit all types of patients quickly.

3. The Drug Z trial is an existing drug being used off-label. After taking the drug for 12 months your rate of progression has been slowed significantly and you wish to continue taking the drug. Although the study gets published in an academic journal, it’s not taken that seriously because it wasn’t a double-blind randomized control trial. If patients are willing to continue taking a treatment off-label with the agreement of their primary care physician, the use of an outcomes-sharing site like PatientsLikeMe provides an ongoing opportunity to monitor adverse events and perhaps even evaluate efficacy at little cost (bearing in mind the caveats and biases of such an approach).

Some members of the medical establishment might say “Well, patients don’t really have a choice. Take it or leave it”. But that’s no longer the case. As our project charting off-label use of lithium in ALS shows, patients are increasingly taking control of their own personal research. Patients are also going the distance to take part in clinical trials they feel offer them the most hope. Our map of ALS patients with a Synapse diaphragm pacing implant shows the distances they have traveled to have the experimental procedure at Case Western in Cleveland, Ohio.

In order to accomplish their goals, clinical trial recruitment will have to change. PatientsLikeMe is playing an active role in driving these changes through from the bottom-up by encouraging patients to share information and take control of their own management. By partnering with organizations running nationwide clinical trials, we want to make it so that clinical research is something you do jointly with patients, not to them.