Monday, August 11, 2008

"e-Patients," Chapter 6:
Learning from e-Patients

This is the 7th post in a series summarizing the e-book "e-Patients: How they can help us heal healthcare." The starting post is here.

This post is different - it's not a paragraph-by-paragraph synopsis of the primary text, it's a separate write-up of my own.

The first time I read the whole document, this chapter (the shortest in the book) lost me. It covers four distinctly different topics - it's almost odd that they're in one chapter. Lots of food for thought, but hard for me to digest. This time I dug in, and it's far deeper than its length suggests. Here's what I found:

Chapter 6. Learning from e-Patients

  • The Internet has allowed ungoverned evolution, taking things in directions nobody anticipated. There's a lot to learn by observing what e-patients come up with when they can do anything they want.
    • Before the Internet, patients in need had no easy way to contact each other and satisfy their (sometimes desperate) hunger for information. The system simply was not producing what people needed and wanted. Some people died as a result, and many were unhappy or frustrated.
    • As previous chapters have detailed, evolution was inhibited by forces and practices in the then-current medical establishment that actively blocked lay access to information.
    • The Internet provides new access to information and a frictionless platform for new pathways to evolve – new ways for patients to serve each other and be served.
      • In this new world, things can evolve in any direction at all, without centralized planning. No authority anywhere can say No.
      • From an economist's point of view, a profound difference is that patients are now creating substantial value in the system with no project funding and no centralized planning. All it's required is to empower/enable people with the Internet and let them pursue what they want.

  • Freedom brings consequences: Patients and doctors alike have discovered that it ain't necessarily easy: pursuing the new power leads to discovering the next obstacles and challenges. New responsibility and new frustrations arise.

  • A new form of privacy becomes available, with new benefits: Seeking care online can provide a kind of privacy that lets people bypass their fear of stigma, so some patients are seeking (and finding) care they'd never sought. But new responsibilities arise, and providers are evolving new practices. We learn by observing what some e-patients are drawn to when nothing's stopping them.

All that is about liberation of patient desires and energy. Sometimes we think only about how patients have been inhibited, but a potentially bigger challenge to conventional thought is this:

Doctors have been frustrated too. People who think doctors are the obstacle haven't heard how hard it is to want change and be told no, by administrators and insurance clerks.

talks about how expensive and ineffective our care policies are - expensive reimbursement for specialist treatments that don't actually improve outcomes, yet inexpensive practices are vetoed, even though they've been proven helpful.

What are we to do?

That's addressed by Learning what patients really want from clinicians. (Emphasis added.) It takes empowerment into a different dimension: not just treatment, but the whole relationship, and the ultimate empowerment question: Who gets to say how it's going to be?

Much of this book has been about what people do in a medical crisis - who takes action and what gets in the way. But for a moment forget about that, and just think how you'd like all medical care to work. If you could switch suppliers (as you can in many other businesses) and find any level of "customer service" and any mix of expertise-vs-self-service that you want, what would you like?

Two Harvard doctors spent two years asking patient/consumers, and this is what they found:
... insurance companies [refuse] to pay for a number of things [these patients considered] vital:

  • Being available to patients by e-mail and cell phone on a 24/7 basis.

  • Giving patients access to their medical records via the Internet. This is evolving rapidly, at last - but that doesn't mean doctors are paid for maintaining the data!

  • Offering newly diagnosed patients crash courses on their disorders. This lack leaves you and me to go find the information among our peers.

  • Training and supporting patients to practice self-managed care. See the "Steal These Slides" triangles again.

  • Checking clinical practices against recommended medical guidelines. Can you believe this kind of research isn't reimbursible?

  • Asking patients to critique their services and to suggest better ways to meet their needs.

  • Involving patients in the governance of our clinic.

  • Providing online support communities for patients.
Think about that list. It would be folly in any modern business to prevent expert staff from doing what people want. Yet for the most part in America today, medical staffers can't bill insurance for those things, so they must do it "off the clock" (payment-wise) - for free.

That's what's faced today by doctors who want to use their training, their motivation, their compassion and their experience to create a new world for us. Many of us have come to accept the consequences. One doctor writes:
"Even at a world-class medical center like Boston, it's gotten so bad that most of us take the defects for granted. Patients expect long delays in getting doctor's appointments. They expect to have to wait long hours in our waiting rooms. They expect rushed, time-pressured visits from overworked, distracted clinicians. They expect to be treated rudely by clinic staffers. They expect that it will be difficult or impossible to contact their clinician in a medical emergency.

"In the traditional clinical model, the doctor essentially works for the insurance company, not the patient."
(Re letting ourselves be treated badly: Not me, you bet your bippy! When that happens to me I speak up, same as if it were a restaurant with crummy service.)

So what are doctors doing? Some are starting practices where they refuse to take insurance, and can provide exactly whatever care they want - by charging a flat all-inclusive monthly fee.

Obviously this is only for the rich - there's controversy about it (Wikipedia). I don't have an opinion about it yet. But consider that the rich in this case (which does not include me yet!) are, in a sense, funding a form of research that's not happening anywhere else: "If you let patients have anything they ask for, what happens? Does anything new evolve?"
"The retainer-based model gives us a chance to say, 'Okay... We're really going to change things. We're going to find some exciting new ways for clinicians and patients to work together. We're going to work with our patients to develop new models of empowerment-based, patient-driven care. And if we succeed, the new practice patterns we create could provide a workable business model for widespread healthcare reform."

What's going on here? I'm not sure yet - But having worked on this post for three hours now, I'm starting to think the message is in that section title: What patients really want. We don't know yet - we're just barely starting to take off the restraints. Stay tuned, world.


One more chapter left: "The Autonomous Patient." But reading that chapter again has really jolted my thinking, and I don't know what to say, yet.

p.s. Two footnotes:
  1. PCPCC's research suggests that what we really want (and certainly what employers want, as insurance buyers) is a patient-centered medical "home." When I was a kid, this was called a family doctor. PCPCC data from around the world shows that where there's good primary care, both costs and outcomes are better.

  2. A few weeks ago Paul Levy commented on the money issue:
The problem with the health care "marketplace" is that it is not a real market. There are so many intermediaries that the usual connection between buyer and seller that we see in other fields does not exist. Thus, the incentives for suppliers (doctors and hospitals) to engage in efficiency improvements and value enhancement are extremely slow to emerge.


  1. The Internet has fundamentally changed the conversation for so many issues in health. This chapter focused on how we can turn things upside down in the current healthcare system, sometimes in unexpected ways.

    In 1988, if you had told any physician or health policy advocate that an ordinary person could start a support group that would be targeted and reach hundreds or thousands of like-afflicted people, they would've laughed at you. "Where's the funding?" "What's the motivation?" "Where will they get the resources?" Patients responded in kind showing that on a shoe-string budget and with the help of some technically-minded individuals, you can create vibrant online communities like BrainTalk and NeuroTalk.

    The chapter then delves into a model embraced by some companies like -- that professionals can also bypass the existing system and offer advice and information and even services directly to the patient, online. Do they get paid for it? Not always, or not always at the rate they might like. But it illustrates quite clearly that the Internet can be quite a vibrant marketplace, even when significant sums of money are not being exchanged (and in some cases, none at all).

    Selfless acts can only go so far, though, and so new models that embrace what patients want -- more contact with their docs, more empathy from them, more information and expert advice -- can be tried. E-therapy is one such model, which transplants core components of the psychotherapy process online. This results in convenience, lower cost, and embracing the disinhibitory characteristics of online communication. It also opens up the possibility or idea of treatment to a new group of people who might otherwise be fearful of trying mental health treatment. It's like dipping your toe into the pool to test the waters. When people try it, they often then go on to regular face-to-face psychotherapy.

    The fee-for-service model has been in place for a long time in mental health treatment, so it's no surprise to see our medical brethren also turning to embrace it as an alternative to insurance company pay. While I'm not a big fan nor advocate for concierge medicine, I understand its benefits over more traditional payment methods. The doctor is working directly for the patient, no one else. You can't beat that in terms of clarity of a relationship and ensuring the doc has the patient's best interests at heart.

    I think your feedback and comments offer an additional nuance not elicited in the chapter itself, and help provide some context for the ideas discussed.

  2. So, it sounds like you have a substantially different take or angle on the whole chapter than I do. (That's fine with me - just noting that your comment seems like an alternate synopsis!)

    If I had to pick a single chapter of the book that could use a lot of fleshing out, this would be it, and I think this dialog is a good start. This chapter goes way beyond the fundamental issue of whether it's sane for patients to even seek info.

    Thanks for your response - what do you think?


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