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Treatment Success Depends Largely On Patient Participation

Ten days ago a post here mentioned the 14th ICSI / IHI Colloquium. I said the Society for Participatory Medicine was well represented, including:

  • Jessie Gruman, four time cancer patient and founding co-editor of our journal, gave an important breakout session, about which I’ll be writing soon. (Jessie is founder and president of the excellent Center For Advancing Health.)

Jessie’s talk was so good it had me going nuts on Twitter – I couldn’t keep up with all the “tweet-worthy” things that came out of her mouth.

Well, I’ve just re-read her text, and it brought back why I went nuts. I was going to write about it, but I’m just going to post the full text.

For those who don’t know, last fall Jessie underwent surgery for her fourth cancer; she has some experience. Read more »

*This blog post was originally published at*

Things You Can Learn From A Bad Nurse

My husband had a screening colonoscopy last Friday.  His nurse in the recovery is the only one I had issues with.  I, not my husband.

All went well, but let me tell you he is not an ePatient Dave.  He did not read his instructions about when to quit eating and the prep.  I did.  I then reminded him along the way:  “Only clear liquids today.”  “You must take the Ducolax at 3 pm.  Do you want me to text you a reminder?”

Sometimes the instructions we give patients are clear, but not always read.

The staff at the front desk were very kind and organized.  Calls had been made the day before and I had insured the insurance information they had was correct.   I did not tell anyone I was a doctor.  I’m not sure if my husband did later or not.


When I was called back by the nurse, she mispronounced my name calling me Rhonda (which I forgave easily).  She did not introduce herself to me.

As we entered the recovery area, she did not take me to my husband and assure me he was okay.  She took me to the desk and abruptly said, “You need to sign this.” Read more »

*This blog post was originally published at Suture for a Living*

You Are “The Biggest Wasted Resource In Health Care” has posted a great new piece by Dr. Roni Zeiger entitled, “The Biggest Wasted Resource in Health Care? You.” Subtitle: “How Your Internet Research Can Help Your Relationship With Your Doctor.” It’s well reasoned and clearly written, and continues the trend we cited a month ago, when Time posted Dr. Zack Meisel’s article saying that patients who Google can help doctors.

Related notes:

– Dr. Zeiger’s article title parallels what Dr. Charles Safran told the House Ways & Means Subcommittee on Health in 2004: Patients are “the most under-utilitized resource.” He was talking about health IT, quoting his colleague Dr. Warner Slack, who had said it many years earlier. I often quote it in my speeches for the Society for Participatory Medicine, asserting that it applies not just to IT but to all of healthcare.

– Dr. Zeiger is on the editorial board of our Journal of Participatory Medicine and is Chief Health Strategist at Google. He gets the power of patient engagement deeply and clearly. Last fall he posted a prediction that in the future it might be malpractice for doctors not to prescribe a patient community to help you help yourself with your conditions.

Prediction: Googling and patient networks will become essential as we move toward the practice of shared medical decision making (SMDM). I know firsthand that the information my kidney cancer community gave me about coping with treatments went well beyond what my excellent clinicians could offer. (We’re starting a series on SMDM. The first entry was in December.)

*This blog post was originally published at*

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*

Should Patient Engagement Be Regulated?

Last month in Cambridge I met Twitter friend Bryan Vartabedian, M.D. (Twitter @Doctor_V) at a meeting at Vertex Pharmaceuticals. We’ll cross paths this fall on the conference speaking circuit. [Recently] on his blog he raised a rowdy, rough, but valid point: As e-patients (obviously including me) get into the business, should they/we be regulated? He said:

  • Will industry be required to publicly list monies used for sponsorship, travel and swag support of high profile patients in the social sphere?
  • Should high visibility patients who serve as stewards and advocates disavow themselves of contact with pharma just as many academic medical centers have begun?
  • As is often the case, I don’t have an answer. I’m just raising the questions. Smart questions. My short answer:

    • Fine with me if industry discloses those payments. Nothing to hide.
    • On the other hand, I think it’s nuts and counterproductive for consumers in any industry to disconnect.

    Academic medical centers have tons of evidence of influence corrupting the academic processes that are at the core of (supposed) science. For patient advocates I don’t see that there’s currently a problem that would justify adding regulators, the ensuing budget impact, etc.

    Besides, there’s a key difference: Academics are supposed to vet industry. It’s their job in this context. Patients, on the other hand, are the consumers — the ones the industry’s supposed to serve. Read more »

    *This blog post was originally published at e-Patient Dave*

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