TED Community » e-Patient Dave deBronkart

More About Me

I'm passionate about

Transforming healthcare to fully leverage the ultimate stakeholder and the most underused resource: the patient

An idea worth spreading

Let Patients Help! http://on.TED.com/ePatientDave

Comments

• TEDCred score: +56.50 TEDCred reflects your contribution to the TED community.

• A reply on Talk: Dave deBronkart: Meet e-Patient Dave

  Jun 25 2012: 11 months later I'm finding this and replying.
  
  I sure feel your pain, including your concern about your employer finding you. It's not a good healthy system.
  
  Re the innovation I seek - all I ask is that those who run institutions accept that the patient and family can be valuable contributors to care. I know LTC is particularly difficult; nobody would be there if they were fundamentally able-bodied and able-minded. But I also know that if family and provider realized how important a role a family CAN play, and how overtaxed clinicians often are (including you), we might all be inclined to collaborate more.

• A reply on Talk: Dave deBronkart: Meet e-Patient Dave

  Jun 25 2012: > “久病成良医”, which means prolonged illness makes the patient a good doctor. So let patients help patients!
  
  I *love* that! I'll quote you on it, in a blog post. Thanks!

• A reply on Talk: Dave deBronkart: Meet e-Patient Dave

  Jun 25 2012: Hi Esther - as I said with others above, I apologize for not noticing this early. (The spread of this video threw my life in the air, and I'm finally getting back to reviewing this a year later, the first time I've had a week's vacation in 7 years, since I got sick.)
  
  > 2) The whole tenor of this conversation is a little frustrating to hear because it seems that doctors are being called failures because they do not cure 100% of their patients.
  
  I'm grateful for your sharing this perspective. (Wish I could find you and reach out, but I don't think TED allows that.) It absolutely wasn't my intention to indict doctors for anything - I was saved by great physicians - all of whom, btw, WELCOMED my participation and my questions, and still do. And that's why the ending chant wasn't "Death to doctors!!" or something stupid like that, it was simply: let patients help.
  
  I love great doctors, I love establishment medicine. What I don't like is the demonstrably false belief by some people in our society (lay and professional) that nobody has anything valid to say if they're not a physician. That's why the message is, as I say, just let patients *help*. Listen to us, engage with us.
  
  I too, like you, have always had access to care (so far, though I've moved to $10,000 deductible insurance).
  
  I'm so pleased that you acted as you did in the case of your mother's medication error - you were empowered and engaged, informed and pro-active. If there were an e-patient badge you'd get one for that alone.
  
  Re something more constructive: it's torture taking my usual hour-long keynote speeches and squishing them into a 16 minute roof-raiser. I had to leave stuff out. You might like the Society for Participatory Medicine, participatorymedicine.org, which is specifically about *collaboration.*

• A reply on Talk: Dave deBronkart: Meet e-Patient Dave

  Jun 25 2012: Good for you, Donna. Sorry I didn't notice this when you posted it a year ago. Stay pro-active!

• A reply on Talk: Dave deBronkart: Meet e-Patient Dave

  Jun 25 2012: Terrific response, Steven! I apologize for having stopped watching the replies last summer, after the formal conversation closed. I'm so glad (for everyone's sake) that you have done what you did.
  
  You might want to subscribe to my blog, epatientdave.com, if this stuff interests you. I don't make money from the site's traffic, I'm just evangelizing the cause, and it sounds like you're already one of us, so to speak.
• +1

  A reply on Talk: Dave deBronkart: Meet e-Patient Dave

  Jun 25 2012: Hi Andre! Are you a clinician?
  
  I'm not sure I understand your point. Are you suggesting that patients who use the internet are hypochondriacs?
  
  And I can't begin to understand your assertion that there are no good medical resources. What's your definition of a good resource?

• A reply on Conversation: "WHY is the patient the most under-used resource in healthcare?? How did that happen?" (Follow-up to LIVE TED Conversation July 27)

  Aug 11 2011: Sarah, in short you're pretty much spot-on with everything you said.
  
  I'd love to know more about how you helped solve your husband's tricky diagnosis. Jerome Groopman MD's book "How Doctors Think" (an e-patient essential IMO) cites that autopsy shows 10-15% of diagnoses were wrong (!), and he focuses at length on the complexities and pitfalls of the diagnostic process.
  
  Every true story helps make the point, whether it's in a speech or a policy meeting. So if you want to share more details, please email me via my profile.

• A reply on Conversation: "WHY is the patient the most under-used resource in healthcare?? How did that happen?" (Follow-up to LIVE TED Conversation July 27)

  Aug 11 2011: PJ, you're entitled to a copy of your record under regulations written for the HIPAA law, passed in 1996. (Health Insurance Portability and Accountability Act)
  
  Here's a flyer about it, with a Seinfeld episode that ties into this... Seinfeld doesn't mention HIPAA partly because HIPAA was passed shortly before this episode aired. http://epatientdave.com/2010/04/23/elaine-and-kramer-play-gimme-my-damn-data/
  
  Many hospitals hide this from you or stonewall it ("It's not our policy") but that is ILLEGAL and can get them busted. Just say "HIPAA" (pronounced hippa) and they ought to cringe...
  
  Mind you, they're allowed to take a month to deliver it, and they can charge whatever state law allows. But, increasingly, if one asks nicely or pleads hardship, the record can be received reasonably quickly for free or at little cost.
  
  Let us know how it goes...

• A reply on Conversation: "WHY is the patient the most under-used resource in healthcare?? How did that happen?" (Follow-up to LIVE TED Conversation July 27)

  Aug 10 2011: PJ, your story brings tears to my eyes. I *so* completely get what you faced, and the truly priceless benefit that accrued from your activism and the fact that your doctor let patients help.
  
  Best,
  Dave
• +2

  A reply on Conversation: "WHY is the patient the most under-used resource in healthcare?? How did that happen?" (Follow-up to LIVE TED Conversation July 27)

  Aug 10 2011: I didn't realize "TED projects" exist, nor education.ted.com. How marvelous! Yes, I'd LOVE to start a few fires in this area. The field needs a SLEW of new thinkers.
  
  "TEDMED" is a separate event licensed by TED - can't use that name. But the point is health, not medicine - the healthier people are, the less medical care we need! So maybe TED Health?