TEDMED last April was a big time for our Society. Many members were there, especially our artist-in-residence Regina Holliday and videographer Ross Martin, who collected the footage for his now-famous Gimme My DaM Data video. And, as we reported here, The Role of the Patient was selected as one of the Great Challenges for TEDMED 2013.

Today a Google Alert alerted me to this video interview, just released on the TEDMED blog, which was recorded during TEDMED 2012 with Dr. James Merlino, Chief Experience Officer at the Cleveland Clinic. The question was, what makes a doctor-patient flourish? (See notes on highlights below, and closing note on takeaways.)

Some highlights about participatory medicine and patient engagement:

  • Q: Who’s responsible for your health – the doctor or the patient?
  • Me: The two bring different things. (That’s why it’s a partnership.) I carry my carcass around and do most of its care, but sooner or later when disease hits I run out of skills.
  • Q: As a patient should I be pushy?
  • Dr. Merlino: It’s a partnership – if patients don’t ask the right questions they won’t get the care they deserve. They should come in educated, and ask tough questions!
  • Q: How do I even know what questions to ask??
  • Me: An empowered person knows what they want, and acts to get it. As in any other relationship, if an empowered person isn’t happy with how things are going, they’ll say so and ask for change; in contrast, a jerk just will be rude.
  • Dr. Merlino: I’d add that patients have a right to be a jerk. [I disagree that anyone has a right to this as their *first* approach, but this was Dr. Merlino’s view.] They’re going through a lot; the care team has to accept what they get. But the internet is the great leveler. Patients should be on the internet, they should be on social media.
  • Q: What about patient communities?
  • Dr. Merlino: We do tell patients to go online, talk to other patients, learn what you can. You can learn what it is to be a patient from people who’ve gone through it.
  • Q: I’ve personally been in situations where my doctor just isn’t hearing me. Advice?
  • Dr. Merlino: If that’s the response you’re getting, you need a different doctor.
  • Me: Before it gets that far, remember that you can speak up and say “I really don’t like how this is going” and say what you’d prefer.

Takeaways:

The views I expressed here will be familiar to our regular readers. But listen to what the Cleveland Clinic has to say about patient communities, researching your condition, and asking questions of your care team. If you ever feel you’re being looked down on by clinicians who act superior, listen to how the Cleveland Clinic trains their staff – all their staff, including doctors and janitors and executives and bookkeepers – that patients come first, and care is what it’s all about.

This is part of the TEDMED Great Challenge “Improving Medical Communication.” To discuss it on the TEDMED Challenge site go here; to discuss the Role of the Patient challenge go here.

 

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