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This is a long overdue post of the next session from our Society’s first conference on October 25. The first keynote, about OpenNotes, was posted here, including this note:

WOW was our Society’s first conference on October 25 a breakthrough event! Titled “Participatory Medicine: Transforming the Culture of Care” (web page), it produced a storm of attention on Twitter (our #SPM2017 hashtag had 15 million impressions in 48 hours, 1.1 million per hour during the event!) and a tremendous boost in awareness of our movement. Importantly, new relationships were formed at our event and our table at the Connected Health Conference, to which we were attached. It was a great and exhilarating outcome for our first-ever conference; our partnership with PCHAlliance (Personal Connected Health Alliance) was highly effective for all involved.

Opportunities and Challenges in Patient Experience: What’s Next?

On this blog yesterday Mark Sullivan’s post is a perfect setup for this session. Titled “Who gets to define the clinical problem?”, he points out that while medicine can diagnose, only the patient can say what the real problem is in their life. If medicine doesn’t solve that, the job didn’t get done.

That’s just one aspect of participatory medicine in patient experience. This panel has terrific anecdotes and program news from several leaders in patient experience, and then, as often happens, the juicy part comes during Q&A. Panelists:

  • Barbra Rabson, CEO of Massachusetts Health Quality Partners (MHQP, Twitter @MHQP, which has been )
    • “We have to be careful, because the healthcare system has a perspective about what engagement is, and it’s not the same as what patients’ engagement is.”
    • “I think the payment system has to get thrown out before this gets fixed – because the incentives are skewed. Sometimes they’re skewed to give you inappropriate treatment.”(!)
    • “Dignity takes people treating other people like people – and that takes time. … the bonus is that if you fix this, you’ll fix clinician burnout, too.”
  • Grace Cordovano PhD (@GraceCordovano) – Cancer Patient Advocate, CEO of Enlightening Results, SPM member
    • “There are so many stories that are bad and wrong – I wish there was a repository of positives that we could all turn to and say ‘Oo, this works!'”
  • Pat Folcarelli RN, MA, PhD – VP, Silverman Institute for Health Care Quality and Safety, Beth Israel Deaconess Medical Center
    • “[Ten years ago] We were segregating the patient experience from the quality work. … then it evolved, when we realized ‘False distinction!’ These groups need to be one quality / safety / experience group.”

Moderator is SPM board member Sue Woods MD, MPH, currently founder of health startup Nudg.

Around 41:53 see the Q&A from Tom Delbanco, co-creator of OpenNotes, about the work that’s been going on since the 1980s. He wants patient feedback posted publicly for each individual clinician.

He’s followed by SPM board member-at-large Peter Elias MD, with a story that resonates strongly with that post yesterday on the importance of realizing that only the patient can say whether they’re better yet. Barbra Rabson replies with a spot-on story from a clinician friend in Minnesota.

Thanks to all our panelists, and to those who asked the questions that pulled it all together to show the real patient impact.


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