Participatory Medicine and Patient 2.0 movement. Time interview w/ @epatientdave (edited 3/11/10) #whypm #hcsm

Thousands of patients like deBronkart are learning as much online — and from one another — as they are from their doctors. These laypeople are banding together and starting websites to help figure out which practitioners to see and which hospitals to avoid, which clinical trials show promise and which experimental treatments are bunk. But as people take more control of their health care — joining an empowerment movement many are calling Patient 2.0 — plenty of doctors are worried about the quality of the information that is being assessed as well as patients’ ability to understand it. Or as Duke neurology professor Dr. Richard Bedlack puts it, “Just because you have the tools to work on your sports car doesn’t mean you’re ready to do it.”

Frustrated by how long it takes cutting-edge knowledge to trickle down from the lab to the doctor’s office, patients have been rushing to come up with their own ways of achieving what the health care industry calls rapid learning.

Sharing data — as well as giving people full access to their digitized health records — is being championed by deBronkart, now an online activist known as “e-patient Dave.” He has teamed up with Dr. Daniel Sands, the physician who helped him kick his cancer into remission in 2007, to co-chair the newly created Society for Participatory Medicine, which encourages patients to learn as much as they can about their health and also helps doctors support patients on this data-intensive quest.

An  important, and  informative piece that introduces on some of the reasons why the the e-patient, participatory movement is gaining so much traction.

Many patients are starting to engage online… they want/need actionable information… and they need it now. When you’re staring Stage 4 disease in the face, waiting weeks or months for visits with a presumed expert is not an option.

I am clearly one of those physicians who *admire* the participatory movement and embrace many of its guiding principles…. but (there’s always a but)… there’s a lot of *bad* information *out there*. Snake oil salesman abound at every corner of the internet… ruthlessly taking advantage of the petrified, and frequently mis-informed who are reaching for any potentially life saving/prolonging alternative.

I believe physicians have a tremendous opportunity (and perhaps obligation) to actively engage the participatory medicine, patient 2.0 movement.

I feel physicians need to *stand-up* and engage the e-patient.

We need to be there as a team member, coach, team leader, teacher and care giver. We need to provide guidance and perhaps a sounding board for patients who are thirsting for knowledge.

The patients are going to continue to pursue their online endeavors… regardless of whether or not the physician community engages. If physicians choose to sit back and wait for patients to come to them… it may be too little, too late….for both parties!



Danny Sands put up a short thoughtful post on the forum.   In this post he challenges the establishment (“who talk the talk but don’t walk the walk”) and is seeking advice from the crowd regarding what efforts, infrastructure or services *we* believe must be in place for a physicians office or an intsitutions to be *certified* as offering patient centric care.

Some of his proposed criteria include:


  • Do you use an electronic medical record?
  • Can patients can see their records online?
  • When the EMR is being used in the office, is the screen is oriented so patients can see the record while the clinician is using it?
  • Are there internet-connected computers and/or free wireless access available for patients/families?
  • Do you have a patient/family advisory board?
    • Do you listen to them?
  • Do you provide online patient services: education, tools, prescription requests, appointment requests, etc.?
  • (Hospitals) Do inpatients have free, reliable and modern entertainment systems?
  • Can patients/families contribute to the medical record?
  • Are patients encouraged to seek health information on the web, offered advice, and given helpful answers to questions about what they find?
  • Are intake forms online, prefilled when possible? (Not handwritten on clipboards)
  • Do providers appreciate that most care takes place outside the office/hospital? (See Doc Tom Ferguson’s famous “steal these slides“)
  • Are providers comfortable saying “I don’t know—let’s find out together”?
  • Do providers practice shared decision making with patients and caregivers?
  • Are patients encouraged to interact with their providers using secure messaging and other tools besides the telephone?
  • Are patients always informed about test results?
  • Does every encounter end with the provider asking if there are other questions or concerns?

Truly patient centric care has  the ability to revolutize how medicine is practiced and how patients receive care.   Is your practice up to the challenge?

after all….

We all stand to benefit, because….  WE ARE ALL PATIENTS !!!


About hjluks

A busy Academic Orthopedic Surgeon, Digital Strategist, Chief Medical Officer and father... intently and efficiently navigating the intersection of Social Media and Health Care.
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4 Responses to Participatory Medicine and Patient 2.0 movement. Time interview w/ @epatientdave (edited 3/11/10) #whypm #hcsm

  1. ePatientDave says:

    Well said, Howard. Thanks. Glad I caught this in the tweetfeed this morning.There’s one detail in Time that I try to correct – Dr. Sands and I didn’t create the Society, it was created by the gang, which then *elected* us as co-chairs. The way it was written was sorta like saying Harry Truman created the United States. 🙂

  2. Howard Luks says:

    He didn’t 🙂 thanks for the clarification.

  3. ePatientDave says:

    Great addition to your Feb post. Commenters on Danny’s post cite the non-tech imperative: just BE patient-centered: (emphasis added)”I’m a technologist charged with capturing and studying medical information, I’ve been a member of HIMSS, AMIA, and ATA. In reality, it doesn’t matter how you achieve being patient centered. It doesn’t take specific technology or protocols. It takes actually being patient-centered.””In The Quality Chasm, the IOM defines patient-centered care as ‘respectful of and responsive to individual patient preferences, needs, and values and ensuring that patient values guide all clinical decision.'””it is important to differentiate between Patient-Centered Medicine and Participatory Medicine. …2 different visions of the importance of the patient as major decision maker in their care.””I would like to add ‘plain language’ to your list of attributes…As one participant pointed out: pity the confused patient looking for the x-ray department when all the signs read ‘Diagnostic Imaging!'”

  4. Howard Luks says:

    points well taken…. While I consider myself strongly patient centric, I would not meet many of Danny’s criteria based on some IT limitations that I am looking to improve upon (@medfusion) is helping). Hopefully, the crowd still considers my efforts, desire, outlook and overall practice patient centric AND participatory….with room for improvement.

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