Comments on: Superheroes and rock stars at the Institute of Medicine

By: Cariunciani

Cariunciani — Wed, 10 Feb 2010 05:11:49 +0000

Hi, as you can see this is my first post here.
Hope to get any help from you if I will have some quesitons.
Thanks and good luck everyone!

By: Participatory Medicine in Time magazine | e-Patients.net

Participatory Medicine in Time magazine | e-Patients.net — Mon, 01 Feb 2010 12:56:43 +0000

[...] Time’s freelance reporter Bonnie Rochman contacted our Susannah Fox to discuss her remarks at the Institute of Medicine last October. [...]

By: What’s the point of Health 2.0? | e-Patients.net

What’s the point of Health 2.0? | e-Patients.net — Mon, 01 Feb 2010 02:58:13 +0000

[...] questions, and speak at conferences where people either know too much about what I study or know so little that I come off as some kind of oracle from the [...]

By: ePatientDave

ePatientDave — Fri, 29 Jan 2010 19:56:36 +0000

Coverage of October IOM mtg: RT @SusannahFox: You heard it first on e-pts.net: http://bit.ly/Pbtf2 :: Time's version: http://is.gd/7eThu

By: SusannahFox

SusannahFox — Fri, 29 Jan 2010 14:24:26 +0000

You heard it here first: http://bit.ly/Pbtf2 :: Time magazine's version: http://is.gd/7eThu

By: A Personal Appeal from ACOR Founder Gilles Frydman » ACOR Blog

A Personal Appeal from ACOR Founder Gilles Frydman » ACOR Blog — Sat, 19 Dec 2009 18:17:13 +0000

[...] those who are building the medical system we will all use tomorrow. Just over a month ago I testified at the Institute of Medicine, demonstrating to CEOs of the largest cancer centers the importance of [...]

By: links for 2009-10-21 « Working Notes 2.0

links for 2009-10-21 « Working Notes 2.0 — Wed, 21 Oct 2009 20:07:41 +0000

[...] Superheroes and rock stars at the Institute of Medicine | e-Patients.net "The Institute of Medicine’s recent workshop on building a rapid-learning system for cancer became, for an hour or so, a seminar on participatory medicine." Useful model for KX and LTCs? (tags: learning socialmedia health2.0 example) [...]

By: Susannah Fox

Susannah Fox — Thu, 15 Oct 2009 16:09:52 +0000

Lindsey, thanks for introducing yourself at the meeting – always nice to meet a Twitter avatar in person I’m glad to hear that you’re optimistic, too – I wonder if all attendees feel the same?

Susan, thanks for sharing that link and for one of the best compliments possible: that my summary is the next best thing to being there. We can’t be everywhere at once, but that’s what social media is for.

By: Susannah Fox

Susannah Fox — Thu, 15 Oct 2009 16:03:50 +0000

Carol, thanks so much – it was your idea that I write this post!

I was feeling whipsawed last week between the established ways (Institute of Medicine) and new ways (Health 2.0). I haven’t yet sorted out my impressions and conclusions from Health 2.0, but The Health Care Blog (http://www.thehealthcareblog.com/) is showcasing some great round-ups and icyou has posted speech excerpts and interviews (http://www.icyou.com/channel/health-2-0s-channel).

By: Susan Promislo

Susan Promislo — Thu, 15 Oct 2009 14:01:27 +0000

I wouldn’t have predicted the linkage between rapid learning and social media, but now that it’s been made, it’s a beautiful thing. Lynn Etheredge has written more on the potential for rapid learning systems to transform medical knowledge and health care delivery here: http://www.rwjf.org/pr/product.jsp?id=15544.

Wish I could have made the meeting, but this summary is the next best thing! Thanks, Susannah.

-Susan

By: Lindsey Hoggle

Lindsey Hoggle — Thu, 15 Oct 2009 13:16:11 +0000

Susannah,

Having been to many like conferences over the years,this was one of the most refreshing yet. The moderator comment at the end summed it up beautifully–”We brought these two groups together (researchers and Health 2.0) to see if further discussion/collaboration is warranted. By the response of the crowd, we can see that it is.” Keep up the great work, thanks for providing a fantastic synopsis and kudos for stressing that both groups have to learn about each other (which sometimes prompts very basic questions.)A powerful day of hope.
Lindsey

By: Gilles Frydman

Gilles Frydman — Thu, 15 Oct 2009 11:15:51 +0000

#WhyPM Information and knowledge are living processes. Learning systems inherently require constant iterative updates. http://bit.ly/2MitmL

By: Carol Torgan, Ph.D.

Carol Torgan, Ph.D. — Thu, 15 Oct 2009 02:45:39 +0000

Susannah –

Thank you for sharing your experience – and the raw data set (the tweets!). To paraphrase you, “The philosophies driving participatory medicine will only transform health care if everyone will…participate.”

Carol

By: Brian Ahier

Brian Ahier — Wed, 14 Oct 2009 21:27:10 +0000

RT @paintmd @ePatientDave: Haha.. @SusannahFox scares researchers @ IOM w/news of what pts are doing! http://bit.ly/451kHW

By: SusannahFox

SusannahFox — Wed, 14 Oct 2009 20:08:46 +0000

Second RT @cwolz "Social media is simply the current expression of patient activation and engagement." http://bit.ly/Pbtf2

By: SusannahFox

SusannahFox — Wed, 14 Oct 2009 20:08:13 +0000

First great summary of my superheroes post: RT @bmossop Take-home msg: Don't fear social media; let it happen. http://bit.ly/Pbtf2

By: Susannah Fox

Susannah Fox — Wed, 14 Oct 2009 20:02:08 +0000

Amy, thanks so much for the thoughtful comment.

I was very encouraged by the tenor and the substance of the discussions that day — these are enormous challenges. Hopefully we will find a way to bridge the gap between the new ways and the old ways of gathering & analyzing data.

I should note that Paul Wallace was just kidding about the stages of grief. Gilles Frydman rightly characterized the mood as amazement, not fear, and I agree.

By: Superheroes and rock stars at the Institute of Medicine | e … | liliveev-Health|Beauty|Medicine|Weight Loss|Fitness

Wed, 14 Oct 2009 19:58:17 +0000

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By: Amy Abernethy

Amy Abernethy — Wed, 14 Oct 2009 19:35:29 +0000

Thank you for taking the time to summarize this, Susannah. One, of many, take home points that I had after the meeting. There is a collision of (1) diffusion of information as you and I know it (social media, wiki worlds, rolling real time analytics) vs. (2) static information distributed by traditional means (publishing, editors, review panels, etc). This is something that we are going to need to sort out in order to promote iterative innovation. Learning systems inherently require constant iterative updates and/or local-modification. In the Wikipedia / patients 2.0 world, we throw something out there and are comfortable with the fact that it may only be 95% accurate or not quite the final product; we recognize that the democracy of modification means that it will be iteratively corrected and become progressively more precise. We must ensure safety (no question), but once safety requirements are met then perfection is not required since it can only ever be a momentary achievement. Information and knowledge are living processes. It was clear to me by the end of the workshop that this is a culture shift that we haven’t gotten our arms around yet.

I look forward to meeting you again.

By: Superheroes and rock stars at the Institute of Medicine | e … | Write What

Wed, 14 Oct 2009 19:26:17 +0000

[...] from: Superheroes and rock stars at the Institute of Medicine | e … Tagged as: abernethy, acor, clinical-trials, dartmouth, emory, health, jamie-heywood, oncology, [...]