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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*

Comparative Effectiveness Research: More Can Be Less


This is a guest post from Dr. Jessie Gruman.


More Can Also Be Less: We Need A More Complete Public Discussion About Comparative Effectiveness Research

When the public turns its attention to medical effectiveness research, a discussion often follows about how this research might restrict access to new medical innovations. But this focus obscures the vital role that effectiveness research will play in evaluating current medical and surgical care.

I am now slogging through chemotherapy for stomach cancer, probably the result of high doses of radiation for Hodgkin lymphoma in the early 1970s, which was the standard treatment until long-term side effects (heart problems, additional cancers) emerged in the late 80s. So I am especially attuned to the need for research that tracks the short and long-term effectiveness — and dangers — of treatments. 

Choosing a surgeon this September to remove my tumor shone a bright light for me on the need for research that evaluates current practices. Two of the three surgeons I consulted wanted to follow “standard treatment procedures” and leave a six-centimeter, cancer-free margin around my tumor. This would mean taking my whole stomach out, because of its anatomy and arterial supply.

The third surgeon began our consultation by stating that her aim would be to preserve as much of my stomach as possible because of the difference in quality of life between having even part of one’s stomach versus none. If at all possible, she wanted to spare me life without a stomach.

But what about the six-centimeter margin? “There isn’t really much evidence to support that standard,” she said. “This issue came up and was discussed at a national guidelines meeting earlier in the week. No one seemed to know where it came from. We have a gastric cancer registry at this hospital going back to the mid 1990s and we haven’t seen support for it there, either. A smaller margin is not associated with an increased risk of recurrence.” Read more »

Personalized Medicine: A 2011 Resolution For You

You are an individual right? To your mom and dad you are/were like no other. Hopefully your family and friends continue to see you as one-of-a-kind. Had you considered your doctor should see you that way too? Not as yet another one with diabetes, or heart disease, or cancer, but as a singular human being with biology that may be different from even the next person through the door with the same diagnosis.

This is the age of “personalized medicine” and it will accelerate in 2011. It is our responsibility as patients to ensure the power of this concept is leveraged for us each time we interact with the healthcare system. This is especially true as we manage a serious chronic condition or a cancer.

Now, in research and in clinical practice there are refined tests to determine what our specific version of a disease is and there are tests to see how a targeted therapy is working in our bodies. In other words, there’s the opportunity to see which therapy might be right for us that might be different than what is right for another person, and then there is the opportunity to monitor the therapy early on to see if it is doing its job. Read more »

*This blog post was originally published at Andrew's Blog*

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*

About Patient Autonomy

Recently, I was involved in a discussion on an email list serve and decided to takes some of my comments on patient autonomy and blog about them. This arose following a debate about whether the term “patient” engendered a sense of passivity and, therefore, whether the term should be dropped in favor of something else, like “client” or something similar.

Having participated in the preparation and dissemination of the white paper on e-patients, I don’t see the need for “factions” or disagreements in the service of advancing Participatory Medicine. As Alan Greene aptly stated: “This is a big tent, with room for all.”

I want all of my patients to be as autonomous as possible. In my view, their autonomy is independent of the doctor-patient relationship that I have with them. They make the choice to enter into, or to activate or deactivate, the relationship with me. They may ignore my input, seek a second opinion, or fire me and seek the care of another physician at any time. They truly are in control in that sense. The only thing I have control over and am responsible for is trying to provide the best advice or consultation I can. Read more »

*This blog post was originally published at eDocAmerica*

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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