Delivering Consisent Care to Inconsistent Patients in a Changing World

So the effect of Free on health care is not a question of if or when, but more like how much?

And we may be starting to see some real impact.   Are more informed patients going to pay the same for health care services?  We want patients to be involved in their care, will there be price differences for those decide to be more involved? Patients as co-producers of health (!) are going to change the way we deliver health care.

PatientsLikeMe is “a community of patients, doctors, and organizations that inspires, informs, and empowers individuals. We’re committed to providing patients with access to the tools, information, and experiences that they need to take control of their disease.”  They are committed to helping those suffering from disease share information about their treatments, and the community members share a lot of information (way more than HIPAA would allow, which is largely the point).

Thomas Goetz wrote a terrific article titled “Practicing Patients,” it is worth the few minutes it takes to read.  Lots of good stuff.  Mr. Goetz does a great job outlining the difficulties the web presents to health care.

When patients take the reins of their own treatment, what role do doctors play? What’s to keep patients from misinterpreting the streams of data and finding false hope — and what’s stopping them from embarking on unproven and even risky treatments or dosages? And what happens if the real-world information at PatientsLikeMe contradicts the clinically proved protocols of medical science?

The article says PatientsLikeMe allows community members to compare treatment plans and patients are changing their drug regimen, for example, sometimes without the advice of a doctor.

In fact, some PatientsLikeMe members have already started doing pretty much what Ensrud warns against. Last November, the A.L.S. community was abuzz with word that researchers in Italy had found that taking lithium seemed to slow the progression of A.L.S. significantly. The Italian study hadn’t actually been published yet, but that didn’t stop 34 members with A.L.S. from soliciting lithium prescriptions from their doctors and coalescing into an ad-hoc clinical trial. There are now 109 members using lithium and tracking their progress with the data tools on the site. The company has rolled out new features to monitor the group with the hope that they will be able to lend a little credence — or cast a little doubt — on the Italian study in a matter of months.

Jamie insists that PatientsLikeMe isn’t encouraging A.L.S. members to start taking lithium. But he is unmistakably excited by the endeavor. As he sees it, the experiment perfectly illustrates how PatientsLikeMe might complement large-scale and long-term clinical research by conducting observational research “on the fly.” Drawing on the notion of personalized medicine, Jamie calls this “personalized research.” And it has a certain logic: for those who already have A.L.S., traditional science works at far too plodding a pace. “The system is broken for terminally ill patients,” says Hanns Riederer, a music producer in Los Angeles who has joined the group of A.L.S. members taking lithium. “It makes us wait five to seven years for results, when we don’t even have that time. Even if it’s half-true, it’s still groundbreaking. I don’t want to wait for something else. I don’t have time to wait.”

The demands that patients are placing on medicine today are high.  The co-producing patient is placing pressures (time and otherwise) on providers that is extending already overextended professionals.  This press release from Science Daily,  “Doctor Who? Are Patients Making Clinical Decisions?” reports a study that indicates, “Doctors are adjusting their bedside manner as better informed patients make ever-increasing demands and expect to be listened to, and fully involved, in clinical decisions that directly affect their care.”

Today’s patients do not simply have a medical complaint, they desire a particular operation and sometimes even a particular implant. The doctor is no longer the sole source of medical information. Patients have enough snippets of information to stimulate a dialogue and clearly express their expectations for a particular outcome and technique to achieve that outcome. They are also demanding quicker recovery, return to higher-level sport activity and earlier discharge from the hospital.

Finally, Dr. Jim Yong Kim, a Harvard Medical School professor, has a made a call for the creation of a “new science of healthcare delivery that would systematically evaluate which techniques worked and which didn’t.”  We need it.  The changes above are just a few of the new pressures on our health care system and finding the best ways to deliver care is a must.  “While treatments have multiplied, the operations and processes for delivering those medicines haven’t kept pace, slowing health improvement in developing and developed countries.”

(h/t: TP Wire Service)

2 thoughts on “Delivering Consisent Care to Inconsistent Patients in a Changing World

  1. The recent developments in technology should help to reduce the costs of healthcare. Microsoft and other companies are developing equipment to take the place of the huge machines that will help to elimante space and of course materials. Hopefully these things will be universally cost effective for all patients. We keep up with these developments our our blog at


  2. Thanks for the great reading! The Science Daily article summarizes some research from Dr. Bo Mason talking about the demographic/psychographic shift of patients from doctor’s point of view. He calls for a more informed, more consultative approach from doctors as the keepers of evidence-based information. You can find it here:

    I think the fundamental, simple but often unacknowledged shift here is not from compliant patients to Internet-enabled patients. It’s from patients to active health consumers. What the Internet is enabling is not just the tools for the afflicted; it’s tools for all of us to take control of our own health and wellness. The founder of my company has blogged about this here:

    Again, thanks for the great reading.

    Jude O’Reilley


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