Uncategorized

e-Patient Dave tells his story

By

In the Connected Health conference at Partners I sat in on a great session in which e-Patient Dave (Dave deBronkart) and his physician, Danny Sands described his use of listservs, the Internet, email and BIMDC’s PatientSite and other tools in his (successful!) battle with renal cancer—after being told median survival was 24 weeks. I won’t tell the whole story as they’re trying to get it published in an authoritative journal—so that physicians will pay attention and promote this use of technology by patients.

Danny Sands says most patients with his condition feel incredibly alone. but "Dave told me he didn’t think he was isolated. He felt
connected.”

Dave said, “Reading and connecting online makes me a better patient. But it doesn’t make me an oncologist.” But doing all these things via ACOR and the use of CaringBridge and PatientSite did, he believe, increase his hope & outlook, and helped make his treatment successful.

A remarkable story and one that we’ll tell more about later.

(Note: I made a minor edit as my original note got garbled between my ears and my fingers!)

 

Livongo’s Post Ad Banner 728*90

7
Leave a Reply

7 Comment threads
0 Thread replies
0 Followers
 
Most reacted comment
Hottest comment thread
6 Comment authors
Susannah FoxCheryl GreeneGilles Frydmanbev M.D.e-Patient Dave Recent comment authors
newest oldest most voted
Susannah Fox
Guest

The video of the Dave & Danny Show is now up on e-patients.net:
Illness in the Age of ‘e’: A case study in participatory medicine

Cheryl Greene
Guest

e-Patient Dave did a great series of blog posts on DrGreene.com as well. I highly recommend it for anyone who is recently diagnosed or is the caregiver of anyone recently diagnosed. He shares incredible insights he learned the hard way. There is a list of all e-Patient Dave’s posts at the bottom of his bio on this page — http://blogs.drgreene.com/perspectives/dave-debronkart/

Gilles Frydman
Guest

Matt is right: no one participating in any ACOR group would ever think that activated and informed patients can replace oncologists. But many participants know that they can guide oncologists by providing them with the most current information about treatments, experimental or standard. By doing so they can easily improve the quality of care they receive. For example, patient networks are much more actively tracking side effects of all treatments than almost any doctor. The only exception is when the clinician is the PI of a trial and his/her ability to get long term funding comes from providing accurate and… Read more »

e-Patient Dave
Guest

Thanks, Bev. Your point about web info vs print was driven home repeatedly at the conference this week. The time delay caused by any conventional vetting process is driving that entire world into dinosaurity – the whole idea of “Wait, wait, I’ll get it to you in a few weeks or months” is becoming less valuable as a method of achieving reliability. And that’s not to mention that in a rapidly changing world, print is instantly outdated. But there’s a deeper thing going on here, even beyond the dynamics of publishing online vs paper. The deeper issue is that information… Read more »

bev M.D.
Guest
bev M.D.

My continued applause to and best wishes for e-patient Dave, whom I know from Paul Levy’s blog. I wish to add a couple bits of anecdotal supporting information. First, my brother has early Parkinson’s disease, and says that he has found much more useful information from the Parkinson’s foundation and patient groups online than most of his (often ill-informed)physicians. Second, Dr. Bruce Friedman on his blog “Lab Soft News” has recently supported the idea that medical information found on the web far outshines that in the print literature available to most laymen. This is truly a revolutionary advance – especially… Read more »

e-Patient Dave
Guest

> musings on his world
MY world? I see… Dr. Grohol diagnoses that my view of reality may not exactly match that of others. 🙂
Well, so be it. Let the revolution begin.

Dr. John Grohol
Guest

And of course, you can read e-Patient Dave’s own writings, insights and musings on his world at his own blog — http://patientdave.blogspot.com/ — and at the e-Patients.net group — http://www.e-patients.net/ — where we keep the conversation going everyday about empowered health care.