How online patient communities make money from patient data

Websites that encourage patients to share their experiences are growing in popularity.

But how reliable are they, and for those that are profit-driven, how do they make their money?

A recent story in the New York Times attempts to answer those questions.

There are plenty of benefits that these sites offer, like providing patients with a virtual support group of sorts. That’s something that most find tremendously helpful and is missing from more traditional health channels.

But patients have to guard against being exploited for profit.

Consider PatientsLikeMe, a popular, for-profit, online patient community. They make their money by selling “health data, gathered from member profiles but with certain identifying information removed, to drug makers and others for scientific and marketing research.”

Because some of these forums don’t have unbiased physician moderation, they are vulnerable to influence from drug company marketers or those pushing unproven therapies. And,

unlike television viewers, who can immediately spot direct-to-consumer drug ads, consumers on some health sites may not fully understand that they could be subject to marketing or marketing research, even if they have read the site’s privacy policy.

And while PatientsLikeMe is transparent about how they market patient data, patients have to be aware of the balance between sharing their experiences with other patients and being used for profit.

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  • Doc D

    I think it was an anonymous quotation, but I’ve used it for years:

    “The plural of anecdote is not data.”

  • Julie

    I don’t think this representation of patient online communities is accurate or fair.

    In addition to PatientsLikeMe, I belong to another online patient group and you would be amazed at the level of knowledge and sharing that occurs on these websites.

    Some patient forums are actually patients doing research, comparing symptoms and treatments about what works and what doesn’t work at a very high level.

    The main forum I am active in is the result of a large group of patients receiving ineffective treatment by physicians over a long period of time (~ 20+ years). Since symptoms span neurological, endocrine, gastrointestinal, cardiovascular and immune systems, there is not one specialty group that grasps the whole picture of the illness.
    Primary care physicians have too little time to be able to handle all this patient group’s issues as well.

    The power of online patient communities is best demonstrated by Dave deBronkart. He attributes his survival of Stage IV renal carcinoma to an ACOR group. Here is a link to his blog: He is also on the Board of Directors at the Society for Participatory Medicine:

    IMO, the age of the physician “knowing it all” about every medical condition is past. Participatory medicine is the way of the future.

    ~ Julie

  • e-Patient Dave

    This is a complex and multidimensional subject. I couldn’t agree more with Kevin’s basic assertion that patients need to be on guard.

    On the other hand, I know first-hand (and second-hand many times over) that Julie’s got her facts straight that many many many patients have suffered at length because they presumed the right/smart thing to do was whatever their physician told them, and who only learned of other options – sometimes life-altering – from an online patient community.

    Patients and caregivers (and, I’d assert, physicians and insurers and policy people) simply need to wise up about the difficulty and skills and knowledge and risks that health and healthcare involve. In my view, only when someone realizes all that can they make truly informed decisions without blinders on or their head in the sand. Trisha Torrey’s written a well documented book about this: “You Bet Your Life: Ten Mistakes Every Patient Makes / How to fix them to get the health care you deserve.” Those are not imaginary stories – including her own, where she was literally told she had six months to live due to inoperable cancer, when in fact she didn’t have cancer at all, and only found it out through her own research.

    I couldn’t agree more with Doc D that the plural of anecdote is not data. Any patient community that doesn’t understand this is being unscientific. On the other hand, it’s equally unscientific to think that our established channels are reliable sources of information – especially to think they’re the only reliable source. I won’t take time here to go into that in depth, but I’ll quote this from the Journal of Participatory Medicine:

    “evidence on the upside of peer review is sparse, while evidence on the downside is abundant. We struggle to find convincing evidence of its benefit, but we know that it is slow, expensive, largely a lottery, poor at detecting error, ineffective at diagnosing fraud, biased, and prone to abuse … most of what appears in peer-reviewed journals is scientifically weak.”

    Was that said by an angry disillusioned patient, mad at publications like the British Medical Journal? Why no, it was written by Richard Smith, after 25 years as editor of the British Medical Journal.

    Then we have the recent news that the PatientsLikeMe community beat Lancet to the punch, by a long shot, regarding lithium, after a peer reviewed journal had published a ludicrously inept paper (contradicted by both PLM and Lancet).

    No smart patient will unthinkingly trust a patient community (nor a physician), online or off. We all need to wise up and be smart consumers. And based on Smith’s writing, I assert that no smart physician or consumer will unthinkingly trust evidence from medical journals.

  • Gilles Frydman

    Reading “There are plenty of benefits that these sites offer, like providing patients with a virtual support group of sorts. That’s something that most find tremendously helpful and is missing from more traditional health channels” makes my blood boil, not just because it smacks of the paternalistic vision of health professionals circa 1980 or earlier, but more importantly because it demonstrates the complete lack of understanding of the network effect.

    Whoever wrote this post MUST understand that patients do not join for “support” but to get better information than what they obtain from their doctors. And we have the data to prove this, at least across the ACOR system.

    It is time to accept that, in the age of exponential data, patient groups are a much better filter to accurate and current information about a single condition that almost all doctors.

  • Doogle

    Of course an anecdote is data. An anecdote is data output from a persons personal experience. But an anecdote isn’t data from an experiment that is controlled for certain factors. Either type of data may be useful or not. If the data (from a description of a persons personal experience) varies excessively from other peoples experience of the same event it may not be representative. Similarly if an experiment does not control the proper factors, then the data obtained may not be representative of the described event either.
    If a study controls the proper factors then the data should be more representative than data from anecdotal sources, but it’s not infallible. There is a continuum represented here, not right or wrong.
    Remember that every controlled experiment has as its inception anecdotes from peoples personal experiences.

  • Vijay Goel, MD

    Unbiased physician moderation is almost an oxymoron. That bias may happen implicitly with the heavy focus on brand drugs during training or CME or it may happen in a more explicit way.

    The data out in the literature is surprisingly bad. Peer review doesn’t stop people trying to show that they’re working on important stuff from conveniently stacking the statistical outcome in a way that makes it look important through trial design, convenient statistical errors, use of relative vs. absolute impact, and downplaying of side effects as part of the cost side of the equation (have you tried looking at studies from an absolute cost vs. absolute benefit perspective…often pretty frightening that we move forward).

    I’m encouraged by the gathering of information across patients in the real world…after all, we’re trying to help patients in the real world and this seems the most useful source of data to learn from. If we hope to do so, we must hope that companies like PLM and ACOR derive enough revenue to build great tools and make further discoveries.

    The non-profit motivation is a giant red herring…many NFP hospitals and insurance companies treat the bottom line same as the for-profits. What does matter is whether their profits are aligned with your health…and there I have more faith in the PLM/ACOR model than I do the insurance or hospital models.

  • Marie

    I am a patient with a chronic illness, Multiple Sclerosis. I am a nurse, knowledgeable about my illness and I take an active role in my medical care.

    However, for myself, I am very uncomfortable with many of the online ‘support’ groups. I joined Patients Like Me three years ago because it seemed like an unique concept. Well, after a couple of days of entering copious amounts of data, I found I just couldn’t maintain that level of interest in myself.

    Within a week I started getting vaguely ominous e-mails from them urging me to keep up with my profile “for the good of the community.” Creepy. After a few more of those e-mails, I canceled my account. It was too Big Brother-ish.

    We all need validation and connection, especially when facing a serious illness. I know many find it in these online sites. I just have concern about the motivation behind some of the sites and the vulnerability of people who are sick, scared and feel alone.

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