Help TEDMED focus on what patients want. Vote.

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.

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.


Posted in: hc's problem list | reforming hc




9 Responses to “Help TEDMED focus on what patients want. Vote.”

  1. Dear Dave et al,
    This is unbelievable, a health(care) conference without patients in the line-up, in program? I hope though they have patients invited to their conferences. I Hope the board of the otherwise great TEDMED confence will act on that.

    More info See also my TEDxMaastricht talk in the link above.

    Lucien Engelen (@lucienengelen)
    Founder and Curator, The Future of Health conferences (e.g. TEDxMaastricht 2011 & 2012)

  2. Bart Windrum says:

    And what’s missing from their list is increasing nurse-to-patient ratio, without which infrequent monitoring results in all sorts of mayhem.

  3. sherry reynolds @cascadia says:

    While reading this I am on a 3 hour conference call National demonstration projects that combines technology with case management for people living with diabetes. The second topic is patient and consumer engagement and advisory boards..

    Don’t give up- one person being at the right table can make a difference for entire systems of care. Our goal is not only to “hear” the patient but design the care system around the key stakeholder – the patient.

  4. As a 4 year patient advocate on the federal level for safer implanted devices, I have been rebuffed. First, 9/2010 as a participant at the FDA Patient Representative workshop and 1/2011 at the FDA Consumer Group MDUFA meeting that I was invited to. I have been advocating for increased medical device industry accountability, heightened protections for patients, post-market registry, product warranty, patient/consumer stakeholder equity in FDA panels and rescind industry pre-emptions/entitlements that conflict with citizen rights to justice. After one FDA Town Hall meeting an industry participant voiced the concern that patients had “hijacked” the meeting when we brought up concerns about implanted surgical mesh, joint replacements, ICD’s and toxic dental mercury. Until there is an attitude adjustment from TEDMED and other conference planners to adopt the “Patients Included” policy, I know that the system is rigged for the “providers” and I will continue to “hijack” meetings.

  5. Hi Dave
    Good job to write this post. Incredible this is 2012. But unfortunately it happens still frequently. Big contrast with last week, the and the e-patient dialogue evening. Still a lot of work to do! Keep the spirit (no doubt about that;)
    “let patiients help” .

    Liesbeth Meijnckens

  6. I’m very disappointed in TEDMED for exactly the reason noted – that it’s about the flashy, shiny, business of medicine. I applied to go as a patient – at first TEDMED offered me a “scholarship” so that I would ONLY have to pay $4,500 for admission; then in a second round of applying, I was denied altogether and told the conference has limited funds. Perhaps if the conference was less about star power, the $12,000 price of admission would go further in terms of bringing patients to the table – but without the star power, who in his right mind would pay $12,000? At least there are conferences like Doctors 2.0 and Medicine X that value patients’ contributions enough to put them on the speaker list and help them get there. I’m working to make a difference for all patients and thank the organizers of Doctors 2.0 and Medicine X for their support and dedication to patients.

  7. matthew holt says:

    Oh stop being silly. Only one flashy tech conference has routinely had panels of patients, given patients their own pre conference and put the patients on the same panel as senior gov officials.

    And it aint Tedmed, nor certain other confs…..

  8. I don’t disagree with Dave’s call to try to have a influence on TEDMED. Every little bit helps. But I see what’s happening as a very broad, long-term social change within the broader context of the impact of digital technology. Medicine will eventually be changed much as other institutions are being changed. But the size and interlocking interests of the health care industry make transformation particularly difficult. TEDMED is just an example.

    I think those interested in participatory health need to focus on what they can implement and who they can support even if it doesn’t go directly into the health care system right now. I personally believe that it’s the cumulative actions a many people on the periphery of health care and people simply active in meeting their own wishes and needs that will eventually change things.

    Leading a movement is frustrating. So I offer this morning a couple of links to things I’ve run across just in the last 24 hours that, to my mind anyway, touch on issues of change. I think they’re worth looking at and mulling.

    Robert Scoble: This app will freak you out, but it’s the future of, well, a lot

    10 leadership principles that never go out of style, from Amazon’s Jeff Bezos

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