CureTogether is 1 year old this month! To celebrate and thank our amazing members and supporters, we’re giving away free T-shirts.

Create a video (under 1 minute) on how you cured yourself, how CureTogether has helped you, or any cure-related theme. The best 20 videos get this beautiful T-shirt!

To enter, upload your entry to YouTube or any video-sharing site by August 13 and send the link to Alexandra at alexandra@curetogether.com.

Good luck!

News Update

CureTogether was also mentioned in these articles recently – many thanks to the authors and readers who keep encouraging this work!

Wired: “Know Thyself: Tracking Every Facet of Life, from Sleep to Mood to Pain, 24/7/365“

Wall Street Journal: “Health Data Proves Contagious on Social Media”

Brainandspinalcord.org: “A Novel Approach to Self-Empowered Healthcare“

One person with a plan can inspire great change.

The person? Harold S. Luft, Director of Palo Alto Medical Foundation Research Institute and Caldwell B. Esselstyn Professor Emeritus of Health Policy and Health Economics at the University of California San Francisco.

The plan? Total Cure, published last year by Harvard University Press, summarized in Dr. Luft’s words: “To change the health care system, combine the collective action potential of government with the flexibility and innovation of well-designed markets.” Read the rest of this entry »

We are excited to announce today the release of “Endometriosis Heroes: 137 Women Share Their Experiences and Treatments.”
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What’s Inside?

137 women share stories, symptoms, and resources
Surprising data on co-morbid conditions
Detailed comments on treatments by real patients
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Please spread the word!

Blog or tweet http://www.curetogether.org/EHeroes

All proceeds from Endometriosis Heroes go to fund the endometriosis data community at CureTogether.org. A FREE PDF version is available if you invite 19 friends to CureTogether.

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What People Are Saying

“Congrats – hands together for you and the amazing disruptive women at CureTogether!” — Jen McCabe Gorman (@jenmccabegorman on Twitter)

“Health 2.0 in action. CureTogether uses real patient stories to bring light to under-recognized condition Endometriosis.” — Chris Hogg (@cwhogg on Twitter)

“With endometriosis, early diagnosis is important. I went from age 13 to age 23 undiagnosed. This is a common time lag for endo diagnosis. There should NOT be such a lag! Endometriosis awareness matters!!” — Jeanne, of Jeanne’s Endo Blog

“This is great. I am just starting to really appreciate what awesome power CureTogether can have.” — CureTogether member

To order your copy, visit http://curetogether.com/EHeroes/

Thank you for your support!

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UPDATE: Since the book release, we have received comments expressing concern about hysterectomy being rated highly as a treatment for endometriosis in the book. In order to balance this view, please read this post: http://endochick.wordpress.com/2009/03/23/jeannes-endo-blog-new-post-hysterectomy-story/

With all the media attention on self-tracking lately (Wall Street Journal, Globe and Mail, GOOD), you might be wondering whether to give it a try for yourself. But the polarized comments on these articles and the labeling of self-tracking as narcissism might be causing doubt.

Here’s a special guest post from CureTogether co-founder Daniel Reda to offer reasons for why tracking yourself is a good idea. And a beautiful image compiled by the Globe and Mail, on the cover of today’s Life section.

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“Whether it’s science, business, politics or your personal life, you can’t effectively understand, manage or improve what you don’t measure.

Human intuitive judgments, even those of experts, are systematically biased. Hundreds of studies have revealed that our decision making, memories, evaluations, estimates (e.g. how long a project will take to complete) and even assessments of how happy something made us in the past or predictions of how happy we would be if something happened in the future (e.g. if we won the lottery) turn out to be quite inaccurate.

It’s humbling, but increasingly clear that the human mind has been optimized over millions of years to solve certain kinds of problems essential to our survival very well (e.g. is this food safe to eat? is this a good mate? is this person a friend or a foe?). It was not optimized to practice law or medicine, do project management or even to predict what will make us happy.

Collecting data and analyzing it objectively is an effort to overcome our very real human limitations – to become better at managing all aspects of our lives, both personal and social.

Whether it’s applied to improving the quality of sex or to improving medical care in developing countries, its superiority over intuitive decisions is increasingly difficult to dispute. To label it narcissism is to judge its application, not its power.

The funny thing is that quickly dismissing it as narcissism is itself one of those intuitive judgments that turn out to be wrong when you look at the data (http://www.kk.org/quantifiedself/2009/02/are-self-trackers-narcissists.php)

You are free to live life by the seat of your pants, but you can’t deny that if you want to improve something, those who objectively measure, test and optimize will consistently achieve better results.”

The Top Web 2.0 Services in Medicine for 2008 have been chosen. The University of British Columbia’s Health Library Wiki published the list here. CureTogether was named one of the top services in the Consumer Health 2.0 space.

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Also this week, GOOD Magazine published an article called ‘The Quantified Self: You Are Your Data’, available here. CureTogether is mentioned in the article, and author David Pescovitz writes, “Data is truth.”

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In other CureTogether news, stay tuned for the first crowdsourced e-book presenting data on our most populated condition. Coming very soon!

Melanie Swan, expert on personalized medicine and advisor to CureTogether, has just published an open access article in the International Journal of Environmental Research and Public Health. It’s called “Emerging Patient-Driven Health Care Models: An Examination of Health Social Networks, Consumer Personalized Medicine and Quantified Self-Tracking“.
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She presents a thorough, well-documented analysis of the players and issues in the personalized health and self-tracking spaces. Recommended for anyone interested in CureTogether or the idea of patients directing their own health. It’s free and a good read!

A new year begins, a new government takes office with Barack Obama at the helm, and a wave of health tools and communities are popping up all over the web. With all this change, the healthcare system is poised for a much-needed overhaul – one that empowers patients more than at any other time in history.

One man is documenting this phenomenon. In a new blog-to-be-book entitled The Decision Tree, Thomas Goetz, deputy editor of Wired Magazine, writes about predictive medicine and the future of healthcare. In his words:

“The premise is that we are at a new phase of health and medical care, where more decisions are being made by individuals on their own behalf, rather than by physicians, and that, furthermore, these decisions are being informed by new tools based on statistics, data, and predictions. This is a good thing – it will let us, the general public, live better, happier, and even longer lives. But it will require us to be stewards of our health in ways we may not be prepared for. We will act on the basis of risk factors and predictive scores, rather than on conventional wisdom and doctors recommendations. We will act in collaboration with others, drawing on collective experience with health and disease, rather than in the isolation and ignorance that can come with “privacy” concerns. And we will act early, well before symptoms appear, opting to tap the science of genomics and proteomics in order to mitigate our risks down the road.

Together, these tools will create a new opportunity and a new responsibility for people to act – to make health decisions well before they become patients. This can be characterized as a decision tree, a series of informed choices we will make to minimize uncertainty and optimize our outcomes. Indeed, we will use decision trees to navigate most of our health decisions, sometimes in overt ways – new decision support tools will both inform us and guide us, and they’ll be steeped in statistics, prediction, and the power of collective experience.”

It will be interesting to follow and participate in the discussion surrounding this book – it’s one that is sure to provoke strong opinions and heated debate. But if the end result leads us closer to a healthcare solution (within the system or outside it) that meets the needs of most people most of the time, then we all win.

*Photo from The Decision Tree