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.
This is a good approach, but not completely implemented at the Clinic. A doctor at the Cleveland Clinic was negligent (twice he failed to read the lab notes that his biopsy was useless. He never redid it…never shared with us…just sent us home saying all was well. A tech alerted at a routine ultrasound that all was not well…but the doc said to cone back in a year. I went for a second opinion…it saved my daughter’s life…but cancer had spread to her lymphs from the negligence.). When the Ombudsman investigated the Chair and a colleague covered for the negligent doctor. It was heartbreaking that not just one doctor had harmed us. Only one doctor backed me and the medical notes were clear a delay in treatment caused cancer to spread in my precious daughter’s lymphs. The Ombudsman agreed with me….but even though we gave up our right to sue on our daughter’s 19th birthday….still no apology…and many people have complained about this specialist’s arrogance.
So…while this promise that Cleveland Clinic is promoting sounds wonderful the reality is still Chair’s covering for blatantly wrong doctors…risk management…and our second opinion doctors inability to make the notes truthful because his Chair throws away his statements that he wants corrected because as he stated, “They have no business being there.”. Just a word of warning about the Clinic’s PR at the end of this article.
I disagree with these doctors that the patient needs to ask the right questions. Especially for low income, monolingual non-English speakers, rural, or uneducated patients how are they supposed to know what questions to ask, how to research questions/answers, and what options they have? It’s so unfair for low-income people who may not have access or the skills to know how to do this. As a HCP, I believe it’s our job to inform the patient of all of their options to make sure that they understand their disease, their treatment, their options, and to always be open for them to continue dialoging in future visits.
Hi Crystal – I know what you mean – implicit in this whole idea is that it requires putting knowledge and information in people’s hands! This is the beginning of a biiiig shift in our culture.
Culture involves shared expectations about who’s supposedly able to do what, and who’s *supposed* to do what. Once you open the door for a class of people to do something new, you have to give them access to what they’ll need to do it.
(I just realized an interesting but imperfect parallel to an issue from my own youth: the voting age used to be 21, but during the Vietnam war it was decided that if you were old enough to get drafted, you should be allowed to vote. An imperfect parallel, as I say, but it illustrates the idea that giving someone a responsibility carries some matching rights.)
This isn’t an overnight fix – culture change never is. Thanks for pointing out this aspect, which needs to be emphasized repeatedly.
And, btw, that’s why I think it’s so important for providers to offer good citizen-friendly patient education materials to anyone who wants them… and that leads to why I’ve often said medical librarians are so important…. and the post last year about Health Literacy Missouri, a great agency whose purpose boils down to Clarity Is Power…
So yeah, I agree. :-)
And it’s Health Literacy Month over on the Emmi Solutions blog, Engaging the Patient! They’re a former corporate member of SPM that makes great online patient education tools.
Crystal, I agree that coming prepared to a doctor’s appointment is not easy for everyone, especially “low income, monolingual non-English speakers, rural, or uneducated patients” as you put it. That is why we need more patient advocates available to the ones that are not able to advocate for themselves.