19 04 2011

I did not attend TEDx Maastricht (you have to be invited)*, but I followed it with one eye on Twitter.

TEDx is a program of local, self-organized events that bring people together to share a TED-like experience: ideas worth spreading. This special TEDx event was held April 4th in the beautiful city Maastricht an had as central theme: The Future of Health.
TEDx Maastricht was an initiative of Lucien Engelen, Director of the Radboud REshape & Innovation Centre. I have attended the Zorg2.0-event Lucien organized in Nijmegen in 2009 and I can imagine the inspiring atmosphere of this larger scale TED-meeting.

There is a special website for TEDxMaastricht, with two tabs showing the program and the videos. There is also a mash-up by the VPRO

Links to videos, photo’s, interviews, a mindmap, social mentions and more can be found at a  Netvibes page, compiled by the Dutch (Tech) Librarian Guus van den Brekel.

Another Medical Librarian, Bianca Kramer, gave a summary of all talks with links to the videos at the Dutch “Medisch team UBU” blog: see part 1 and 2. Especially recommended for Dutch people.

Here are a few talks I selected, mainly chosen because of what others said online.

In the TEDx, like the Zorg2.0 meeting, the patient is central. Thus lets start with the patients.

I was very much impressed by the talk of Sophie van der Stap – “Girl with the nine wigs”. Apart that she “performs” very well, she has a moving and heartwarming story.  At the age of 21 years she was diagnosed with a rare form of cancer. When she became bold, because of the chemotherapy, her wigs provided a “medicine”, because it made her feel happy and strong again.

“I know that in the Medical world the focus is on the pills, the tests and the surgery site of cancer. However I do hope that my story inspires you to share it with your patients to find their own cancer holiday” 

Perhaps the most well known e-patient is David deBronkart, better known as “e-patient Dave”. He shares what he went trough as an almost dead patient, and how he found out what e-patient (really) means. His motto: Patient is not a third person word & The patient is the most underutilized resource in health care. January 2007, Dave was diagnosed with kidney cancer at a very late stage. His doctor “prescribed” a patient community site: ACOR.org :

“They very quickly told me Kidney Cancer is a not common disease, get yourself to a specialist center, there is no cure, but there is something that sometimes works, that usually doesn’t, called high dose interleukin. Most hospitals don’t offer it, so they won’t even tell you it exists. And don’t let them give you anything else first and by the way here are 4 doctors in your part of the US that offer it and here are their phone numbers…..”

There is no (other) website that gives you this info: Patients know what patients want to know!

Here is the complete video with more examples what e-patients stand for and don’t miss his rap act: Give me the data! (It is my live to save)

An other noteworthy video comes from Salmaan Sama, a medical student from Amsterdam, who lost his passion and drive in his study (it was all about medicine, physiology etc), but who regained it: At TEDx he presents a new initiative: cmpassion for care based on the TD-price winning initiative of Karen Armstrong.

The first statement of the charter:

We believe everyone has the capacity to be compassionate: to treat others as you would wish to be treated. To be kind and tender, generous and forgiving, hospitable, helpful and attentive, curious, listening and present, empathic and connected, respectful, understanding and acknowledging. It takes courage, self-reflection and self-compassion.

You can sign the charter here.

Next I would like to mention the talk of the very compassionate neurologist Bas Bloem, entitled “from God to Guide”. In the must-see video he actually plays both God and Guide. Earlier I have blogged about “Bas Bloem’s” project Parkinson Net (5). I’m really impressed by such a doctor who is able to translate ideas into reality.

Another Dutch physician (neurosurgeon) Pieter Kubben talked about a subject close to my heart: EBM tailored to the patient (i.e. see my posts, refs 7- 10). What does a patient expect when he visits a doctor (besides compassion): the best available treatment! “Best”, according to the EBM-evangelist Sackett, is scientific evidence combined with physician experience and patient preference.
PubMed is the most used information source for biomedical information. This information is increasing to what the WHO calls: “no do gap”. Unlike what people think (especially policy makers) EBM is not restricted to class I evidence (RCT’s and meta-analyses): class II and III evidence count as well. RCT’s may show which treatment may be “better”, but it is not tailored to the patient. Pieter thinks decision supportive systems, which tailor the information to the physician and the patient, might offer a solution.
In an article in the main Dutch medical journal, the NTVG, Piet Kubben explains that such a support system is unlike cookbook medicine. Freely translated:

What is the problem? If I make lasagna and follow a recipe, there a good chance that the result will be edible. I can leave ingredients, or add some, but when I do I have a reason for it. Decision support is no decision making. You can make another decision and sometimes you should..

Pieter has  made 3 free apps for the I-phone: ‘NeuroMind’, ‘Safe Surgery’ en ‘SLIC’. NeuroMind, an app meant to support decision making in neurosurgery is listed in the widely cited “Top Apps” on iMedicalApps.com. We can thus assume that Pieter knows what he is talking about and that he can set realistic goals.

Daniel Kraft gave a dazzling presentation about hall kinds of web savvy future tech solutions.

Health 2.0 talks often (over)emphasize the role of technology in health care. Wouter Bos, former Deputy Prime Minister and Minister of Finance provided the antidote for this belief in his “back to earth” speech“We should cherish the technology, but it won’t change rising healthcare costs.”  “In health care, if there is a new technique, medicine available, we WANT it”.
Well it was a talk we can expect form an invited Party Pooper. But he made a good point.

Note: I was inspired to write this post because of the theme of the current Medical Grand Rounds held at the blog of the Schwartz Center with the theme “Patient Centered Care”. This post would fit in well. Unfortunately I only thought of it, when the deadline had past. 😦 So instead of them linking to me I will link to the published Grand Rounds instead.


* This appeared a mistake. You have to be invited, but you should at least register, which I forgot….

  1. TEDx Maastricht webcast in Darwin #tedxmaastricht (youthhealth20.com)
  2. TEDxMaastricht – Hope in technology and participatory medicine (ehealth.johnwsharp.com)
  3. TEDx Maastricht – The Future of Medicine (ehealth.johnwsharp.com)
  4. TEDx Maastricht – and we’re part of it… (digiredo.wordpress.com)
  5. Web 2.0 and Health Care Reform: Two Dutch Examples (1) (laikaspoetnik.wordpress.com)
  6. E-Patients and I-Patients (laikaspoetnik.wordpress.com)
  7. How will we ever keep up with 75 trials and 11 systematic reviews a day (https://laikaspoetnik.wordpress.com)
  8. The best study design for dummies (https://laikaspoetnik.wordpress.com)
  9. Notsofunny: ridiculing RCTs and EBM (https://laikaspoetnik.wordpress.com)
  10. The Web2.0-EBM Medicine Split [1] Introduction into a short series (https://laikaspoetnik.wordpress.com)



2 responses

11 05 2011
Health Experts & Patient Advocates Beware: 10 Reasons Why you Shouldn’t be a Curator at Organized Wisdom!! #EndToFarms #OrganizedWisdom « Laika's MedLibLog

[…] objectivity of health information of utmost importance. I believe in the emancipation of patients (“Patient is not a third person word”, e-patient Dave), but it can only work if patients are truly well informed. This is difficult enough, because of […]

22 05 2011
Pieter Kubben

Thanks for the mention. I added this post to the Media Coverage list at NeuroMind’s homepage: http://dign.eu/nm

(the new version 1.6 is available for Android starting today, iPhone & iPad uploaded to App Store and expected to follow within 1-2 weeks)

All the best,

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