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First Report From The Society of Participatory Medicine’s Newly-Appointed Public Policy Committee Chair, David Harlow

In December, the Society for Participatory Medicine’s executive committee appointed health law attorney David Harlow to represent the Society in public policy matters. Regular readers of HealthBlawg::David Harlow’s Health Care Law Blog know what a patient-centered, participatory thinker David is. This is his first report.

David HarlowI am delighted to offer my first report as Public Policy Committee Chair for the Society of Participatory Medicine. I encourage all of you who are not yet Society members to join, and I encourage new and old members to consider volunteering to help with the wide range of public policy issues facing us today.

Over the past couple of months, the Public Policy Committee has gotten its sea legs. We are beginning to add the Society’s voice to the national discourse on patient engagement in a formal manner. As planning for health reform and related initiatives becomes more concrete, it is clear that patient engagement and patient-centeredness are key issues to be considered. For example, it was encouraging to hear Centers for Medicare and Medicaid Services (CMS) Administrator Don Berwick speak about the “Triple Aim” at the Accountable Care Organization (ACO) workshop this fall, and explicitly link the achievement of the triple aim — better care for individuals, better health for populations, and reduced per-capita costs — to patient engagement and empowerment.

There will be many opportunities for the Society to engage with policymakers, payors and provider organizations as this work continues. CMS and its many related organizations, as well as many provider and private sector payor organizations recognize that without maintaining a focus on the patient at the core, health reform and related health IT initiatives cannot be successful. We’ve kicked things off on two fronts — ACOs and Stage 2 Meaningful Use rules. Read more »

*This blog post was originally published at e-Patients.net*

Practice Variation: Essential To e-Patient Awareness

This is the first of the follow-up posts I hope to write from participating in the Salzburg Global Seminar titled “The Greatest Untapped Resource in Healthcare? Informing and Involving Patients in Decisions about Their Medical Care.”

One of our purposes on this site is to help people develop e-patient skills, so they can be more effectively engaged in their care. One aspect is shared decision making, which we wrote about in September. A related topic, from August, is understanding the challenges of pathology and diagnosis. Both posts teach about being better informed partners for our healthcare professionals.

I’ve recently learned of an another topic, which I’m sure many of you know: Practice variation. This is a big subject, and I’ll have several posts about it. It’s complex, the evidence about it is overwhelming, and its cost is truly enormous. Read more »

*This blog post was originally published at e-Patients.net*

Patient-Centered Outcomes Research: Will Patients Be Involved?

A year ago Gangadhar Sulkunte shared his story here about how he and his wife became e-patients of necessity, and succeeded, resolving a significant issue through empowered, engaged research. As today’s guest post shows, he’s now actively engaged in thinking about healthcare at the level of national policy, as well – and he calls for all patients to speak up about this new issue. – Dave

I recently came across a Pauline Chen piece in the New York Times, “Listening to Patients Living With Illness.” It refers to a paper by Dr. Wu et al, “Adding The Patient Perspective To Comparative Effectiveness Research.” According to the paper and the NY Times article, Dr. Wu and his co-authors propose:

  1. Making patient-reported outcomes a more routine part of clinical studies and practice and administrative data collection.
  2. In some cases requiring the information for reimbursement.

Patient-Centered Outcomes is outcomes from medical care that are important to patients. The medical community/research focuses on the standard metrics related to survival and physiological outcomes (how well is the part of the body being treated?). In the patient-centered outcomes research, they will also focus on outcomes important to patients such as quality of life. In other words, the care experience will be viewed through the eyes of the patients and their support groups to ensure that their concerns are also addressed. Read more »

*This blog post was originally published at e-Patients.net*

AMIA: Why The “Hold Harmless” Clause In EMR Contracts Is Unethical

Last Friday the board of the American Medical Informatics Association (AMIA) published a position paper in its journal saying that the “hold harmless” clause is unethical. One of the paper’s authors is Dr. Danny Sands, currently President of the Society for Participatory Medicine. I hope to write more about it this week, after attending the AMIA conference in DC, but here’s the basic issue:

— For ages, makers of electronic medical record systems (EMR) have insisted on a “hold harmless” clause in the contracts a system buyer must sign. It says, in essence, that if any harm comes to anyone because of a system problem, the buyer (the hospital) will hold the manufacturer harmless.

— In other words, if anything goes wrong with the system and someone gets hurt, it’s not the manufacturer’s fault. The reasoning has been: “Hey, you doctors are smart. If our system displays a wrong value, you’re supposed to notice it.”

I’m told this policy has been one big impediment to adoption of EMR systems, because it removes all motivation for vendors to fix things that make their product hard to use: If there’s a bug or the system slows someone down, and a patient gets hurt, the hospital gets sued, not the vendor.

If you were a hospital, wouldn’t that make you eager to buy? What would that do to your trust of the vendor? Patients, how do you feel about that? Providers? Read more »

*This blog post was originally published at e-Patients.net*

The “Lies” Of Medical Science: What’s An e-Patient To Do?

There’s an extraordinary new article in The Atlantic entitled “Lies, Damned Lies, and Medical Science.” It echos an excellent article in our Journal of Participatory Medicine (JoPM) a year ago by Richard W. Smith, 25-year editor of the British Medical Journal, entitled “In Search Of an Optimal Peer Review System.

JoPM, Oct 21, 2009: “….most of what appears in peer-reviewed journals is scientifically weak.”

The Atlantic, Oct. 16, 2010: “Much of what medical researchers conclude in their studies is misleading, exaggerated, or flat-out wrong.”

JoPM 2009: “Yet peer review remains sacred, worshiped by scientists and central to the processes of science — awarding grants, publishing, and dishing out prizes.”

The Atlantic 2010: “So why are doctors — to a striking extent — still drawing upon misinformation in their everyday practice?”

Dr. Marcia Angell said something just as damning in December 2008 in the New York Review of Books: “It is simply no longer possible to believe much of the clinical research that is published, or to rely on the judgment of trusted physicians or authoritative medical guidelines. I take no pleasure in this conclusion, which I reached slowly and reluctantly over my two decades as an editor of The New England Journal of Medicine.” (Our post on Angell is here.)

What’s an e-patient to do? How are patients supposed to research if, as all three authorities say, much of what they read is scientifically weak? Read more »

*This blog post was originally published at e-Patients.net*

Latest Interviews

IDEA Labs: Medical Students Take The Lead In Healthcare Innovation

It’s no secret that doctors are disappointed with the way that the U.S. healthcare system is evolving. Most feel helpless about improving their work conditions or solving technical problems in patient care. Fortunately one young medical student was undeterred by the mountain of disappointment carried by his senior clinician mentors…

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How To Be A Successful Patient: Young Doctors Offer Some Advice

I am proud to be a part of the American Resident Project an initiative that promotes the writing of medical students residents and new physicians as they explore ideas for transforming American health care delivery. I recently had the opportunity to interview three of the writing fellows about how to…

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Latest Book Reviews

Book Review: Is Empathy Learned By Faking It Till It’s Real?

I m often asked to do book reviews on my blog and I rarely agree to them. This is because it takes me a long time to read a book and then if I don t enjoy it I figure the author would rather me remain silent than publish my…

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The Spirit Of The Place: Samuel Shem’s New Book May Depress You

When I was in medical school I read Samuel Shem s House Of God as a right of passage. At the time I found it to be a cynical yet eerily accurate portrayal of the underbelly of academic medicine. I gained comfort from its gallows humor and it made me…

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Eat To Save Your Life: Another Half-True Diet Book

I am hesitant to review diet books because they are so often a tangled mess of fact and fiction. Teasing out their truth from falsehood is about as exhausting as delousing a long-haired elementary school student. However after being approached by the authors’ PR agency with the promise of a…

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