Saturday, October 3, 2009

Many goings-on ... an update

This is an update for friends who don't hang out routinely in the world of healthcare transformation, where I'm spending more and more of my time. For those who do, there's nothin' to see here, so just move along. :-)

The Society for Participatory Medicine is gathering steam. I would love it if you join; it's only $30 (yes $30 to join a medical society), and yes everyone is welcome (that's the whole point of participation), and if you want to join but $30 is hard right now, you can have a scholarship. Free. So just go join. Thank you.

Its new Journal of Participatory Medicine (free, online) is launching at the Connected Health conference in Boston, Oct. 21-22. My doctor and I are speaking on the 22d. Twitter uses can follow the Journal at @JourPM.

In the run-up to the launch, as chief blogger on, I'm organizing a series of blog posts on "Why PM?" (participatory medicine). (Twitter users, this series is hashtag #WhyPM.) Posts in this series:

  • 9/21: Give patients (that’s you) access to all their (your) data – so they can help - a comment on my keynote speech at the Medicine 2.0 conference in Toronto 9/17. We hope to have video of the speech available soon, but not yet.

  • 9/26: Participatory Medicine Around the World: the Seven Preliminary Conclusions reach India - a physician in India discovered the e-patient blog and agrees with our principles

  • 9/27: What Participatory Medicine can learn from a $2,467 phone bill - as I originally noted on this blog, when I went to Toronto there was a bit of a mishap on my Verizon Wireless bill. How it happened - and what they did to fix it - contain valuable lessons as healthcare looks as adopting better practices for good quality data.

  • 9/28: Social media and Healthcare: Hospitals Lead. One of the great gurus of social media, Rohit Bhargava (of Ogilvy's online division), wrote that hospitals are starting to adopt social media. I commented, "A signal moment has happened: When a major business authority with no history in healthcare speaks up about a shift in the wind, it’s worth noting..." And, terrifically, Rohit responded by looking into the Participatory Medicine concept, and tweeted "love the concept of participatory medicine" and he started following @JourPM on Twitter. That is cool. And important.

  • 9/29: Journal of Participatory Medicine and e-Patients. In Toronto I met up with John Sharp of the Cleveland Clinic. (That's the place that's often cited as a model of modern approaches to healthcare.) He's entirely "boarded the boat" about patient empowerment; his guest post for us starts "If you have not read the e-Patient White Paper, you do not understand the future of medicine."

  • 9/30: A Lifetime of Participatory Medicine Can Start With Maternity Care. The PM movement has been discovered by Lamaze International. I was thrilled when their blogger Amy Romano contacted us, because for the first time it brings a non-disease community into the e-patient community. And, Amy's a heck of a writer, as shown by this guest post on our blog.

  • 10/1: Participation Matters by Susannah Fox of the Pew Internet & American Life Project. Pew doesn't advocate on any issue; Susannah simply documents what Americans are and aren't doing. Significantly in this post, she reports that 42% of adults say they know someone who's been helped by medical info they found on the internet, up substantially from 2006; and only 3% know someone who they say was harmed, same as 2006.

  • 10/2 - and this is the astounding one: “Doctors Are Killing Their Profession, the Healthcare System and Their Patients with Paternalism”. Those strong words come from a board certified neurosurgeon who describes, on his blog, what paternalism in medicine looks like, and the harm it's doing. (He saw my presentation in Toronto and mentions it.) Significantly, he also describes how many doctors have been taught to think that way: "Your patients don't want to know the details, they just want to get well. It's your responsibility to shoulder the burden." Clearly undoing that training is a big part of what the Society hopes to achieve.
I've also continued working half-time at TimeTrade Appointment Systems, while starting my healthcare consulting business So yeah, it's been busy!

Next up, flying tomorrow to San Francisco for two events, HealthCamp SFBay and then on a panel at Health 2.0. Friday 10/9 I'm attending a patient safety event in Boston.

Then, the following weekend, Sunday night 10/11, we go to beautiful Ogunquit, Maine, to hear the phenomenal Suede, in her first New England appearance in a year! If you're in this area, get reservations and join us!


  1. Dave;

    Two questions:

    1. Do you travel to speak? I am thinking of recommending you to my former hospital system in the Washington D.C. area. (not that they will listen; they never did while I worked for them!)

    2. Are you getting questions from physicians regarding the malpractice aspects of participatory medicine? As in, the patient and doc may agree on a course of treatment (or on VBAC as in your previous post). The treatment does not work or there is a complication. Patient now sues doc claiming they should have had better judgment. Legal system still holds doc entirely responsible for his/her professional judgment, no matter patient's input. (I can EASILY see this happening with the VBAC case......)
    I would think participatory medicine would require extremely careful documentation on the part of the physician.


  2. Yes, I travel; see my schedule. See also the contact page on that site. (I'm at Logan right now, to be on a panel Tuesday at Health 2.0 in SF.)

    From what I hear, the malpractice topic will be a great and important one for PM. One thought, which you've probably seen on Levy's blog (I don't have a link): I've heard that when docs apologize, lawsuits are less common. My gut (based on anecdoates) suspects that the underlying issue is that vengeance is sought when someone feels they've been stiffed, cut off, abused. Feeling heard and connected would resolve that. (I emphasize that I'm not expert on this - that's just my intuition.)

    Your question raised another thought: what if women started suing for deprivation of choice, for forcible Cesarean? What if a tort lawyer hauled out the VBAC evidence in court and sued for Wrongful SomethingOrOther?

    I heard the other night that 3-8% of women have diagnosable signs of PTSD after birth (no I don't have any details) - what if it turned out that there was real liability for forcing a woman into a type of birth she didn't want?

    That's a wild speculation - I'm just thinking. Having never given birth myself, I'm doomed to something of an observer's perspective.

  3. Yes, I did have the same thought as you, that PM will enhance the dr-patient relationship and perhaps therefore lead to a lower likelihood of suit. However, this is by no means universally true. I will be interested in any followup posts you have as you pick up more info on this issue.

    As to VBAC and Caesarean, this is way outside my area of expertise. This is one of those gray areas where there is evidence on both sides (e.g. some evidence that Caesarean babies have more allergies/infections due to lack of exposure to normal gut flora during vaginal birth, but also evidence that VBAC is not 100% successful, etc.). Clearly this is one area where decisions must be individualized, as long as both the doc and mother focus on the needs of the fetus and no one else. As I mentioned, the OB malpractice situation intrudes rather forcefully into this discussion, which circles back to our original discussion!
    Anyhow, interesting thoughts - I am going to recommend my brother, a Parkinson's patient who regularly plies his neurologist with the latest research, join your society. Onward and upward!



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