The e-patient white paper: Seven Preliminary ConclusionsComments on: --

By: The Mystery of the Crystal Portal

The Mystery of the Crystal Portal — Tue, 18 Oct 2011 19:44:12 +0000

The Mystery of the Crystal Portal Hello.This post was really fascinating, particularly since I was looking for thoughts on this subject last couple of days….

Hello.This post was really fascinating, particularly since I was looking for thoughts on this subject last couple of days….

By: En busca de los e-Pacientes españoles en Salud 2.0 Euskadi

En busca de los e-Pacientes españoles en Salud 2.0 Euskadi — Mon, 11 Jul 2011 07:47:27 +0000

[...] Libro Blanco del e-Paciente (inglés) [...]

By: Barrett Wildes

Barrett Wildes — Wed, 22 Jun 2011 03:45:56 +0000

Interesting blog! Is your theme custom made or did you download it from somewhere? A theme like yours with a few simple adjustements would really make my blog stand out. Please let me know where you got your design. Thank you

By: On Ideas | The future of healthcare communications

On Ideas | The future of healthcare communications — Tue, 27 Jul 2010 19:22:45 +0000

[...] industrial complex,” individual consumers are taking the reins and changing the rules. The doctor-patient relationship is morphing as fast as the channels through which they communicate. Competing for share of [...]

By: Maarten den Braber

Maarten den Braber — Wed, 21 Oct 2009 03:16:25 +0000

Read the e-patient whitepaper! http://bit.ly/RZ7Mk

By: Journal of Participatory Medicine and e-Patients | e-Patients.net

Journal of Participatory Medicine and e-Patients | e-Patients.net — Tue, 29 Sep 2009 12:01:33 +0000

[...] you have not read the e-Patient White Paper, you do not understand the future of [...]

By: e-Patient Dave

e-Patient Dave — Sun, 27 Sep 2009 12:14:36 +0000

btw, does it exchange data in any way with other systems like Google Health and Microsoft HealthVault?

By: e-Patient Dave

e-Patient Dave — Sun, 27 Sep 2009 12:13:13 +0000

Pam, that’s a great-looking service! I’ll look into it later today.

By: Pam Swingley

Pam Swingley — Sun, 27 Sep 2009 04:01:42 +0000

As the primary caregiver for my 80-year-old father, I searched in vain for an online service that would help me manage his health care. The chapter “Why Personal Online Health Networks Have Received So Little Attention” addresses this very issue.

To help my father, and other’s like him, I founded http://www.rememberitnow.com. RememberItNow! is an online private care community service, very similar to the one imagined in this paper. Caregivers can set and send medication reminders, share responsibilities, keep a health journal, track wellness, organize contacts, bookmark websites, schedule care and more.

By: Participatory Medicine around the world: the Seven Preliminary Conclusions reach India | e-Patients.net

Sat, 26 Sep 2009 17:27:44 +0000

[...] published January 27, [...]

By: Bertalan Meskó, MD

Bertalan Meskó, MD — Tue, 28 Apr 2009 20:48:38 +0000

RT @moggy99: "http://bit.ly/17bI2Y e-patients.net + link for white paper" Very useful, thank you for the link!

By: Stars & Stripes (!): Patients urged to take charge of their care | e-Patients.net

Fri, 13 Mar 2009 03:12:32 +0000

[...] doctor together(!) agreeing to these principles? Wouldn’t that be participatory – even collaborative? Share and [...]

By: A simple proposal « Adam Bosworth’s Weblog

A simple proposal « Adam Bosworth’s Weblog — Fri, 27 Feb 2009 20:07:21 +0000

[...] care physician looking over their shoulder to help them follow their personal plan. In general, data shows that mindful and aware people manage their health better. The point of this post is that not only can we afford collaborative medicine — we can afford [...]

By: Gilles Frydman

Gilles Frydman — Fri, 13 Feb 2009 17:20:09 +0000

Susan, we have written here about the wonderful initiative you are sponsoring. In particular the addition of the ODLs in the PHR is, I believe, an innovative and important addition. See Have you ever heard of ODL? and Observations of Daily Living and Personal Health Records. I guess you can call us early adopters. I will be delighted to help in any way I can.

By: e-Patient Dave

e-Patient Dave — Wed, 11 Feb 2009 14:27:07 +0000

Wonderful to hear from you, Susan.

For those who don’t know, the Robert Wood Johnson Foundation was a key factor in sponsoring Doc Tom Ferguson’s work in creating the white paper. The entire participatory medicine movement owes a vote of thanks to RWJF.

Looking forward to greater participation in the new project, too….but this week I’m swamped because besides my day job, I’m chairman of my barbershop chapter’s Singing Valentines program. What a hoot THAT is! Nothing like a barbershop quartet showing up in tuxes, singing a love song to the victim, handing over a Polaroid and a rose, and skedaddling. :) http://www.SingingValentines.com. (They have ladies’ quartets, too.) Ambushes available for the office, restaurant, home, etc.

By: Susan Promislo

Susan Promislo — Wed, 11 Feb 2009 14:20:48 +0000

Great summary — Project HealthDesign, a national program of the Robert Wood Johnson Foundation’s Pioneer Portfolio — is tackling some of these same challenges. Focusing on a new vision for next-generation PHR systems, in its first phase, the program supported grantee teams to design prototype IT applications tailored to help consumers with specific health goals or conditions and that could run on a common platform. Now they are looking more intensively at how patients can harness data related to everyday health observations — exercise, nutrition, pain, sleep, etc. — and how clinicians can meaningfully and effectively factor such info. in to mainstream care processes.

The program is actively seeking input on the best ways to go about this, and will release a CFP later this spring. We’d love thoughts from you and your readers — you can find out more at http://projecthealthdesign.typepad.com/project_health_design/2009/02/going-forward-with-project-healthdesign-wed-like-your-input.html. To sign up for CFP alerts, visit http://www.rwjf.org/services/.

-Susan Promislo
Communications Officer, Pioneer Portfolio
Robert Wood Johnson Foundation

By: Wendy Hoechstetter

Wendy Hoechstetter — Tue, 10 Feb 2009 08:33:06 +0000

That 400 years bit blew my mind as well, Dave. Good lord. I knew there was an excess of information out there, but that is incredible.

It brought home even more how important it is for people to be their own advocates – or to at least have one with them when they’re in the hospital.

People really do need to know that they *can* make a big difference in their own healthcare, even if they’ve got top flight doctors.

Keep up the great work, my friend.

By: disruptivewomen

disruptivewomen — Mon, 09 Feb 2009 19:08:37 +0000

The e-patient white paper: Seven Preliminary Conclusions | e-Patients.net http://tinyurl.com/ach3zs

By: George

George — Sat, 07 Feb 2009 21:35:37 +0000

Good post. Another good use of the internet is for email communications, to exchage information, between patients and physicians. Needs to be private and secure though, to satisfy regulations. An example is http://www.housedoc.us, which is free and easy to use.

By: e-Patient Dave

e-Patient Dave — Wed, 04 Feb 2009 02:40:30 +0000

Hahahahaha, Wendy – I didn’t know about that online video! Time to blog about it!

Seriously, thanks for passing this along. It may take a decade for people to realize that we can’t even ASK docs to be know-everythings anymore – the “400 years” part still sticks in my mind, and that’s not some allegedly wacko patient advocate talking, it’s the head of the National Library of Medicine. Holy cow.

I know, though, that some people don’t want to hear about it. At some point I feel that I have to let go and let them have their way. But I do make a point of ensuring that they’ve at least heard that they have a choice.