I learned today (via Twitter!) that TED.com has posted my TEDx Maastricht talk, with its rallying cry “Let Patients Help,” on the TED.com home page. Wow.
For those who don’t know, TED.com is the “real” TED event’s website. TEDx conferences are smaller, independently organized events, with varying formats. So it’s quite a thrill to have a TEDx video promoted to the “big TED” site.
Plus, this is a new edit, with fancier mixing of the slides and the video. (The earlier one is here.)
Acknowledgments:
My deepest thanks to Lucien Engelen of Radboud University Nijmegen Medical Center in the Netherlands, and his colleague Corine Jansen, who handled so many event details. And their whole team. The entire event was top-notch.
As I say at the beginning and end of the video, the entire talk is inspired by the many e-patients and empowering, participatory clinicians (doctors, nurses, everyone) who for many years have practiced this creed: Let Patients Help.
To read more about those pioneers, see the e-Patient White Paper “e-Patients: How They Can Help Us Heal Healthcare” on the right side of e-patients.net. That’s the document that blew my mind in January 2008 and set me on this path.
I subscribe to the TED series and this video came today. It is absolutely wonderful. I posted it on my facebook to all my survivor friends.
What an inspiration! It gives me great pleasure to be even remotely associated with you and your work!
I don’t know whether to congratulate you or thank you. So, please accept both sentiments plus my appreciation for all you are doing. I will be certain to use your web site as a resource going forward!
Yes, congrats and thanks are good responses to this wonderful inspirational video.
I posted the video to my health/medical news blog [http://jflahiff.wordpress.com]
The posting includes a sampling of related resources in these areas
—How to evaluate medical and health information
—Great starting places for quality health and medical information
—Online Health Communities/Support Groups
Without the resources available online, I never would have figured out why I am in chronic pain everywhere (because the Doctors didn’t help much in seven years) and I would not be rehabilitating myself now. Thanks Dave, it’s so refreshing to hear someone on TED talking about how important patients’ research really is. Keep it up! :D
I am so in love with your TED talk. As a thyroid patient with Hashimotos Disease, taking my thyroid care into my own hands changed my life. Online patient advocates helped me find the medicine that helped me re-claim my life.
I placed your video on the home page of 8 Women Dream because you are the perfect example of how passion can change the world. Your story will inspire millions to take their health care into their hands and demand better treatment.
My father died of Esophageal cancer when he was 49 — I was 18. When you tell the story about your daughter — I cry. I am so thrilled for you and the hope you must bring to so many cancer patients.
I think my father is in heaven giving you a standing ovation.
Thank you.
Catherine Hughes
Catherine, Charlotte, everyone – thank you SO much for your deeply moving comments. I’m sorry it’s taken so long to respond – life has simply run away with me.
The “Let Patients Help” video is up to 170,000 views in a little over 3 weeks, and has now been subtitled in 8 languages. Clearly this is a message that has gone viral and is spreading around the world.
Catherine, your remark especially about your father in heaven brought tears to my eyes. Thanks so much, everyone. Keep it up.
AND, if you have any patient communities that you want to tell people about, go to http://www.epatientdave.com/communities and leave a comment, so we can pass it on.
Hi, Dave,
I enjoyed watching your TED talk. I’m curious about the part where you say you were able to find other e-patients to help you out online 4 years ago, but that those same resources are not available now. What happened? It sounds like you found ACOR through your doctor. What if a person’s doctor isn’t so helpful?
Is there a website (or a network of websites would be ideal) that organizes patients, helps them connect and refers them to communities of patients specific to their area of concern?
Thanks,
Sri
Hi Sri – sorry for any confusion – what I meant was that you can’t find a *web site* that will tell you the words those *patients told me* – there’s no site that says “Kidney cancer is an uncommon disease,” “IL-2 is the only thing that sometimes cures people,” “Here are docs who do it,” etc.
Also – there’s no good database of patient communities yet – the best I can offer is an early, unsorted list at http://www.epatientdave.com/communities.
Great video, Dave. You just keep getting better and better as a speaker, too ;->
I’m going off to look up some of those sites you listed. My father is dying of stage 4 lymphoma…
Wendy
Hey, Wendy… good to see you, sorry to hear about your dad. Do come back if you can and let us know what you find is good for patient communities.