Partnering for your health

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You go to a conference, hear many great speakers, take some notes, learn about some new firms, make new connections, and catch up with colleagues. There are usually one or two key takeaways. Those btn_epatient_spm (002)stories or presentations that make a significant impression on you.

At the New England HIMSS Chapter Annual Spring Conference this week, that moment came during the session by Dave DeBronkart, known as e-Patient Dave, and Dr. Daniel (Danny) Sands, his primary care physician and faculty member at Beth Israel Deaconess Medical Center. Together they were two of the twelve founders of the Society for Participatory Medicine and the inaugural co-chairs.

Prior to the conference, I knew who e-Patient Dave was and had seen him on social media, but I had never heard his personal story nor met him. Their session demonstrated the power of storytelling at its best. Now I understand why Dave is so passionate about patient engagement.

Their session, “Hot or Not? A Doctor and Patient Role-Play the Archaic and the Modern Way to Engage” was a combination of role play and presentation. Dave started by describing the moment when he was diagnosed with a stage 4 cancer in 2007 following an incidental finding from a shoulder x-ray. He learned early in his journey that the median time left for a patient with his diagnosis was 24 weeks. He thought then that he had at most 6 months to live. That got my attention!

Their role play illustrated what may be the typical patient – physician interaction vs what should be a true patient – physician partnership. They covered communications (email, texting), patients doing their own online research and sharing information with their physician, timely access to results on a patient portal, and disease specific online support groups.

The Society for Participatory Medicine focuses on the power of partnership between patients/families and clinicians. They describe “Participatory Medicine” as a movement in which patients and health professionals actively collaborate and encourage one another as full partners in healthcare. They believe this leads to improved health outcomes, greater satisfaction, and lower costs.

As Dave said, you can use many descriptors for the e-patient – engaged, equipped, empowered, educated, or enlightened. He said he survived cancer because he had access to information and acted on it as an engaged patient. Let that sink in. Of course, having specialized cancer care available to him was critical.

I teared up along with Dave during his closing remarks. Remember, he was diagnosed with a stage 4 cancer 12 years ago. In closing, he showed us a picture of him walking his daughter down the aisle in recent years and another one holding his first grandchild a few years later.

The theme for the conference was Care Across the Continuum and Consumer Health. There were other excellent sessions covering care management and predictive analytics, physician burnout, open source code and the integrated healthcare team.

But the session that Dave and Danny did was the only one to get a standing ovation. No surprise.

16 thoughts on “Partnering for your health”

  1. Liza Cameron on said:

    All the presenters were great at the conference, but Dr. Larry Sands and e-Patients Dave’s was definitely the one that stood out. It was engaging and personal and connected you. That connection helped to open our eyes to the importance of patient engagement and the remarkable impact on patient outcomes it can have!

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  2. Elizabethann Diekmann on said:

    Such an important and vital message. Spread the word!! Working together brings all kinds of miracles.

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  3. Mark Rangell on said:

    Great story, thanks Sue. With all the talk these days around telemedicine and emerging technologies, it’s great to see the blend coming together and the extraordinary value that engaged patients can play in their own care process. I know Danny Sands and would have loved to see the presentation. Do you know if it was recorded?

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    • Sue Schade on said:

      Mark, yes, it was recorded. Think you will be able to see/hear session if you go to the New England HIMSS Chapter website.

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  4. e-Patient Dave on said:

    Great summary, Sue – so good to meet you IRL!

    The point that I hope everyone came away with is that while there’s plenty to grumble about in today’s health IT systems – and in social media, with its anti-vax wackos and all – is that for healthcare to achieve its potential, it’s ESSENTIAL to have access to all relevant information. As it says in Danny & my book Let Patients Help, “Nobody can perform to the top of their potential if they don’t have the information.” Amiright??

    The function these systems fulfill really is important – even though they have a long way to go in usability and interop and all. We must keep our eyes on the prize, and think about the desperate families who want healthcare to achieve its potential.

    Thanks again for “getting it” so accurately and for taking the time to share it.

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  5. Danny Sands on said:

    Thanks for the nice post, Sue. I invite your readers join our quest to transform the culture of patient care and consider becoming active members of the Society for Participatory Medicine (participatorymedicine.org).

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  7. e-Patient Dave on said:

    The video’s not edited and posted yet – when it is, I’ll send you the link, Sue.

    In the meantime, over on HealthcareIT Today, #hcldr chat co-leader Colin Hung posted too, including a distant phone video of the duet at the end of our keynote. 🙂

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    • Sue Schade on said:

      Dave, thanks for letting me know. Will add the link to my post once I get it. Good to see that Colin covered your session as well.

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  8. Pingback: NEHIMSS 2019: teaching Patient-Clinician Partnership with role play – and a song

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