Correction 4/12: I’m glad to say that there are in fact several patient speakers at TEDMED. There was a massive communication disconnect in the months leading up to this TEDMED, leading to my impression that there were no patient speakers; I hope to find out how it happened. So I’m editing out those points in the post below. The bottom line remains that we should certainly vote to be sure The Role of the Patient is recognized by TEDMED as one of the Great Challenges facing healthcare.

I apologize to anyone misled by what I wrote because of the disconnect.

Please go to the Great Challenges page
and vote for #19, The Role of the Patient.

The top 20 will be selected. At this writing we’re #4 – down from #1 two hours ago.

See other patient-centered suggestions below.
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The event: A number of SPM members are at TEDMED, the big high-profile conference happening this week at the Kennedy Center in Washington. As I’ve discussed with the conference organizers, I have a great concern that the event is conceived from the old-school perspective: it’s about the business of medicine, not about whether patients are getting the care they need.

In the list of 70 speakers, there is not a single patient. We must vote.  

18 months ago TEDMED opened with a spectacular patient story from Charity Tillemann-Dick. This year there are none.We must vote.

This industry-centered perspective is understandable but we must guide the founders to start thinking the way other industries do: ask “What’s important to the people who consume our services? What do they want?” (More on this problem below.)

Our opportunity to vote: Happily, TEDMED and the Robert Wood Johnson Foundation have provided a structure for us to say what’s missing. And we must vote.

That means you. Tell friends. Forward this to others, or cross-post it.

Patients outnumber the people in industry. We can vote, and we must. 

Patient-centered suggestions:

Go to the Great Challenges page, and in the topic list on the lift, select the ones you want to vote for.  You’ll be asked to register your email address. Each email address gets to vote for 20 of the 50 candidates; the top 20 will win.

Here is my personal list of a patient-centered “slate.”

  • #19: The Role of the Patient
    • I’m the designated “advocate” for this challenge, but they wrote it without patient input – more on this below.
  • #20: Eliminating Hospital-Acquired Infections
  • #23: Eliminating Medical Errors
  • #11: Making “Informed Choice” Work Better – a totally participatory topic
  • #14: Reforming the Medical Ecosystem – transforming the business to be less contorted and more focused on what people need

Your suggestions are welcome in comments. On my personal site “Luke the [Medical] Librarian” said this:

…  challenge #18 (“Improving Medical Communication”) seem to be consistent themes in many conversations about e-patients and patient empowerment. … As a librarian, I also consider challenges #41 and #48 also very important components to effective, sustainable patient empowerment.

SPM member Len Sender added:

Let’s also not forget the adolescent and young adult cancer cohort, challenge #27

About the Great Challenges program:

TEDMED and RWJF have decided to crowdsource a list of twenty “great challenges” to be topics of discussion in the coming year. Rather than deciding these a priori from within the ivory tower, they’ve floated a list of fifty. Votes from attendees and the public will decide which ones are the topic from now until TEDMED 2013.

About My Challenge, #19: The Role of the Patient:

I was happy to be invited to represent SPM as the designated “advocate” for #19, “The Role of the Patient.” But in that role, I have to say, they got it wrong. That shows why we must vote.

The organizers created all the challenges without asking the stakeholders, then went to find advocates. Some I’ve spoken to were recruited just in recent weeks. So the challenges aren’t necessarily written as the advocates would say them, and ours is one example.

SPM is a movement in which patients shift from being mere passengers to responsible drivers of their health, and providers welcome and encourage them as full partners. That’s a shift in the role of the patient. But they worded the challenge from the provider’s perspective:

Patient empowerment can be a double-edged sword. [What??] From hospitals and insurance companies to doctors and patients themselves, much of the medical system increasingly treats patients as “customers” or “consumers,” terms that some people love and others hate. [True.]

If patients are customers, does that mean “the customer is king” or does it mean “buyer beware” – or both?

If patients retain their traditional role, does that mean doctors are in charge? Are both in charge somehow?

How is “power” shared among all stakeholders and how should it be shared?

As I boarded the plane yesterday, ahead of me in line was a consultant from a big-name firm that advises hospital executives. At one point he said, “Patients are irrelevant: they’re acted upon.” I suspect that attitude is reflected in the absence of patients on the stage this year.

That’s why I think #19 should have been worded “Listening to the Voice of the Patient.” We don’t have a single session here on refocusing this giant industry on what people want – so costs keep going up and patients aren’t getting happier. Not a thing on reducing spending on things we didn’t ask for, like “the medical arms race”; not a thing on reducing accidental killings in hospitals; not a thing on Let Patients Help: None of those things are of any use to industry.

That’s why we must vote to include them as topics next year.

So: if you think next year’s TEDMED should have much more about the role of the patient – the voice of the patient – then please go vote for #19. And ask every patient community you can find to join us.

p.s. This is such a business conference that even #3 – “Making Prevention Popular and Profitable” – is about making a buck at it: “How can we unlock prevention as  a trillion dollar business in America?” If your view is different, vote.

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