We are so excited!

CureTogether’s entry into the Ashoka Changemakers patient empowerment competition won the Early Entry Prize for best idea entered by the early deadline!

From the competition website:

The Amgen Foundation is supporting the Patients| Choices| Empowerment competition with Ashoka’s Changemakers to answer the question of how we can elevate patients’ voices to improve health outcomes globally.

Submit your solutions, or nominate a project, in this challenge that empowers patients to make decisions with confidence and clarity, in concert with people who care and can help.

Congratulations to the Early Entry Prize winner: CureTogether – Crowdsourced Patient Experience. Learn how they are working to empower patients HERE.

Prizes: Enter before the competition deadline of 5PM EDT on September 29, 2010 and you may be one of three winners that receive USD $10,000 to advance your project.

If you have a minute, please help by leaving a comment on our entry page - it will help us have a better chance of winning the competition.

Thank you for your help!

IFTF’s HealthCare 2020 map – click here for the full version

Our friends over at Institute for the Future have released their vision of health and healthcare in 2020. We’re excited that CureTogether is included on their map!

They placed CureTogether at the intersection of taking a Commons approach (self-organized participatory solutions that bring a new culture of cooperation) to Making Information Actionable (filtering and integrating health-related information in meaningful ways).

What do you think of their vision for the future of health and healthcare?

]]> http://curetogether.com/blog/2010/08/19/the-future-of-health-in-2020/feed/ 0 http://curetogether.com/blog/2010/08/14/new-feature-talk-to-your-closest/ http://curetogether.com/blog/2010/08/14/new-feature-talk-to-your-closest/#comments Sat, 14 Aug 2010 15:57:20 +0000 Alexandra Carmichael http://curetogether.com/blog/?p=1370

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Imagine being able to talk to someone who shares the same 7 conditions you have. What if they’re also your age? They could be going through the same thing every day that you do.

You start to wonder, is their experience the same as yours? Do they have the same symptoms? What treatments are they trying? Do they also have the same side effects as you?

In a new feature released at CureTogether this week, now you can not only find people that are your closest health matches, but you can send them a private message to ask them these questions. They can respond privately to you, and you can both choose what information to share with each other.

To start talking, just log in to CureTogether, and click on the “Connect” link on the right menu of your home page. You’ll see a list of people to connect with and a “Send a private message” button to click.

Please let us know how you like this new feature and how we can improve it. We hope it helps. Happy connecting!!

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We’re excited to announce a new development at CureTogether. Our most active contributing members have been upgraded to official Curators!

Amazing people like Ricky Buchanan in Melbourne, Australia (pictured above and found at http://notdoneliving.net/) are combing through CureTogether data. They are carefully checking for accuracy, duplicate entries, and generally helping to make sure that the information we have for our over 500 conditions is the highest quality it can be. This enables more discoveries that we can share with our condition communities and the larger public.

Ricky and people like her are the reason CureTogether was started, and we are so grateful and glad to welcome the support of these inspiring heroes. Thank you!!

]]> http://curetogether.com/blog/2010/08/06/welcome-curetogether-curators/feed/ 0 http://curetogether.com/blog/2010/07/19/the-skin-disease-race-is-on/ http://curetogether.com/blog/2010/07/19/the-skin-disease-race-is-on/#comments Mon, 19 Jul 2010 17:19:12 +0000 Alexandra Carmichael http://curetogether.com/blog/?p=1349

Do you have a skin disease? If you do, please join the race.

CureTogether is excited to announce a new research project we’re collaborating on. Researchers Suephy Chen, Adam Sperduto, and Bob Swerlick at Emory University are doing a study to compare whether online recruiting methods can beat their traditional in-clinic recruiting methods.

Basically, they want to see whether CureTogether or in-person methods can get more people to answer a skin disease survey. Here’s your chance to help show the power of online communities.

“Please click here if you have been diagnosed with eczema/atopic dermatitis, seborrheic dermatitis, psoriasis, rosacea, or acne and would like to learn more about participating in a clinic research study conducted by the Emory University School of Medicine Department of Dermatology. Thank you!”

We’ll keep you posted on how the race goes!

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You are a part of this.

It’s a new kind of health book that puts real-world data before authority, and teaches you how to make better decisions for your health.

Inside, you’ll find 7 insight-filled sections to help you navigate your way through Back Pain.

Download your copy here, or read on for more details.
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The Story

Health books are usually written by experts who offer authoritative information about conditions, symptoms and treatments – people who usually don’t live with the condition themselves, but nevertheless tell you what you should do because they know best.

This book is different. It’s based on the real-world experiences of patients. Our approach is not to tell you what to do, but to give you the hard data and the education to help you make your own decisions – to manage your own health. It’s not about doing it alone. It’s about taking control of the process and becoming the primary decision maker when it comes to your health.
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What’s Inside

• Do You Have Chronic Back Pain? How To Find Out
• Getting Diagnosed – What Tests Are Available?
• Feeling Better – How To Find a Treatment That Works
• Taking Action – How To Run a Successful Self-Experiment
• Are You Biased? How To Make The Right Decisions
• The Numbers – What Patients Have Discovered About Back Pain
• Bleeding-Edge Research – Top 5 Breakthroughs From Scientists Around the World

Download your copy here. Happy reading!

Christine Peterson is hosting the first Personalized Life Extension Conference, October 9-10 at the San Francisco Airport Marriott. She is offering a $100 discount on the $275 registration price to all CureTogether members who register with the discount code “CureTogether”.

From the conference website:

“Topics to be covered in lectures, Q&A, and during meals and breaks include:

Supplements: Should we be taking resveratrol, vitamin D3, fish oil, coenzyme Q10, acetyl-L-carnitine, melatonin, DHEA, and many others? Benefits, costs, risks, and supplement advisors to consider.

DNA testing: Costs are coming down fast. We can’t re-write our DNA (yet), but there is much that can be done to “turn on” and “turn off” genes related to individual risks.

Telomere protection: Getting your telomeres measured, and techniques to protect them, from inexpensive to very expensive. TA-65 is the latter; we’ll debate value and cost.

Finding a life extension doctor: Very few physicians are informed or even interested in anti-aging techniques. Let’s explore how to find the ones who are.

Blood testing: If you’re young and healthy, get extensive blood work done now to get a baseline. If older, see where you’re too low or too high and take corrective action — the “normal” range accepted by the average doctor is almost certainly too broad.

Gadgets: From low-end blood pressure readers and Omron pedometer, to the mid-range Zeo sleep monitor, ShoulderFlex massager, and emWave PC biofeedback, to the high-end UVB non-tanning “tanning bed” for stimulating vitamin D production, we’ll look at which equipment is safe and cost-effective.

Calorie restriction and intermittent fasting: It’s pretty clear these can delay the diseases of aging. We’ll hear how hard or easy they are to carry out in real life. “Mimics” of calorie restriction: We’ll consider whether any of these are ready for prime time. Inflammation: Increasingly seen as central to the aging process, we’ll look at ways to measure and reduce this damaging process throughout the body, from taking aspirin and anti-inflammatory supplements to reducing abdominal fat and increasing dietary fiber. C-reactive protein (CRP) monitoring can track progress.

Sleep: Quantity and quality of sleep is increasingly being recognized as critically important; we’ll look at the factors governing these and how to control them.

Stress reduction: Perhaps the most important single factor to tackle, due to its connection to blood pressure and cortisol, and yet a challenge to reduce given today’s lifestyles. Many approaches can help –yoga, humor, meditation, sex, massage, vacations, moderate exercise, downsizing, simplifying, reducing email frequency, and getting off the computer one day a week.

Self-experimentation: Many longevity techniques involve changing a parameter and tracking its effects. We’ll look at designing such experiments, learning from the Quantified Self experience.

Exercise: What types, what’s the minimum, and (just as important) the maximum from a longevity perspective, since overtraining can cause overly high cortisol levels.

Eating: A complex, controversial, and centrally important topic for longevity — advice to take (not the USDA), macronutrients, micronutrients, organic vs. standard, raw vs. cooked, probiotics, what types of processing to avoid, specific “foods” to avoid including high-fructose corn syrup and partially hydrogenated oils, techniques for weight control and reduction, how to reduce the time required. Specific foods to consider: curcumin, turmeric, cinnamon, green tea, black tea, berries, dark chocolate, and stevia to replace sugar.

Mood: Optimistic people live longer, it’s claimed. We’ll look at mood-influencing supplements, techniques, and actions, from SAMe, rhodiola and Prozac to the pursuit of love and intimacy: married people and those in monogamous long-term relationships are said to live longer.

Enhancement and brain function: To figure out how to live longer, it would help to be smarter. Some of us have tried mental “enhancers” such as Provigil or Ritalin; let’s compare benefits and risks. We’ll look at supplements thought to preserve brain function, such as galantamine.

Standards of information quality: Large double-blind studies are not available for many longevity questions, and may never be due to high costs and inability to patent existing nutrients and practices. Yet health claims must still be evaluated, using less-ideal data.

Common errors: A common mistake in life extension news items is mistaking correlation for causation. Let’s examine how to guard against this and related confusions, rampant in media reports and even in some medical studies.”

IFTF BodyShock the Future entry idea: Shock Your Body from Institute for the Future on Vimeo.

INSTITUTE FOR THE FUTURE ANNOUNCES BODYSHOCK:
CALL FOR ENTRIES ON IDEAS TO TRANSFORM LIFESTYLES AND THE HUMAN BODY TO IMPROVE HEALTH IN THE NEXT DECADE

“What can YOU envision to improve and reinvent health and well-being for the future?” Anyone can enter, anyone can vote, anyone can change the future of global health.

With obesity, diabetes, and chronic disease rampaging populations around the world, Institute for the Future (IFTF) is turning up the volume on global well-being. Launching today, IFTF’s BodyShock is the first annual competition with an urgent challenge to recruit crowdsourced designs and solutions for better health–to remake the future by rebooting the present.

BodyShock calls upon the public to consider innovative ways to improve individual and collective health over the next 3-10 years by transforming our bodies and lifestyles. Video or graphical entries illustrating new ideas, designs, products, technologies, and concepts, will be accepted from people around the world until September 1, 2010. Up to five winners will be flown to Palo Alto, California on October 8 to present their ideas and be connected to other innovative thinkers to help bring these ideas to life. The grand prize winner will receive the IFTF Roy Amara Prize of $3,000.

“Health doesn’t happen all at once; it’s a consequence of years of choices for our bodies and lifestyles–some large and some small. BodyShock is intended to spark new ideas to help us find our way back to health,” said Thomas Goetz, executive editor of Wired, author of The Decision Tree, and a member of the Health Advisory Board that will be judging the BodyShock contest in addition to votes from the public.

“BodyShock is a fantastic initiative. Global collaboration and participation from all voices can produce a true revolution,” said Linda Avey, founder of Brainstorm Research Foundation and another Advisor to BodyShock.

Entries may come from anyone anywhere and can include, but are not limited to, the following: Life extension, DIY Bio, Diabetic teenagers, Developing countries, Green health, Augmented reality, Self-tracking, and Pervasive games. Participants are challenged to use IFTF’s Health Horizons forecasts for the next decade of health and health care as inspiration, and design a solution for a problem that will be widespread in 3-10 years, using technologies that will become mainstream.

“Think ‘artifacts from the future’–simple, non-obvious, high-impact solutions that don’t exist yet, will be among the concepts we’re looking to the public to introduce,” said Rod Falcon, director of the Health Horizons Program at IFTF.

BodyShock’s grand prize, the Roy Amara Prize, is named for IFTF’s long-time president Roy Amara (1925-2000) and is part of a larger program of social impact projects at IFTF honoring his legacy, known as The Roy Amara Fund for Participatory Foresight, the Fund uses participatory tools to translate foresight research into concrete actions that address future social challenges.

PANEL OF COMPETITION JUDGES

Joanne Andreadis

Lead of Innovation, Centers for Disease Control and Prevention

Linda Avey

Founder, Brainstorm Research Foundation

Jason Bobe

Director of Community, Personal Genome Project
Founder, DIYBio.org

Alexandra Carmichael

Co-founder, CureTogether

Ted Eytan, MD

Kaiser Permanente, The Permanente Federation

Rod Falcon

Director, Health Horizons Program

Peter Friess

President, Tech Museum of Innovation

Thomas Goetz

Executive Editor, WIRED Magazine
Author, The Decision Tree

Natalie Hodge,MD FAAP

Chief Health Officer, Personal Medicine International

Ellen Marram

Board of Trustees, Institute for the Future
President, Barnegat Group LLC

Kristi Miller Durazo

Senior Strategy Advisor, American Heart Association

David Rosenman

Director, Innovation Curriculum
Center for Innovation at Mayo Clinic

Amy Tenderich

Board Member, Journal of Participatory Medicine
Blogger, DiabetesMine.com

DETAILS

WHAT:
An online competition for visual design ideas to improve global health over the next 3-10 years by transforming our bodies and lifestyles. Anyone can enter, anyone can vote, anyone can change the future of health.

WHEN:
Launch – Friday, June 18,2010

Deadline for entries -Wednesday, September 1, 2010

Winners announced -Thursday, September 23, 2010

BodyShock Winners Celebration at IFTF – 6 – 9 p.m. Friday, October 8, 2010 – FREE and open to the public

WHERE:

http://www.bodyshockthefuture.org

(and 124 University Ave, 2ndFloor, Palo Alto, CA)

Women walking around with no underwear?

No, this is not something from an adult site, it’s the treatment reported to be most effective in a live, online survey of 750 patients with vulvodynia (chronic vulvar pain) at CureTogether.

Yes, I also live with vulvodynia, like 18% of US women. And yes, I’ve definitely gone “free” on painful days – it’s not something a doctor ever told me, just something I found really helped.

So what are the 7 surprisingly simple treatments that patients have reported? From the infographic above:

no underwear, ice, physical therapy, “clitoral distraction”, rinsing with water after urination, going gluten-free, and doing Tai Chi

The top left quadrant shows treatments that not many people have tried but that have above-average effectiveness, so presumably if more people tried these, they would be helped (gluten-free diet, Tai Chi).

Treatments in the lower-right quadrant are ones that lots of people have tried but that have below-average effectiveness, so presumably if fewer people tried these, they would be free to find more effective treatments elsewhere (antibiotics, steroid cream).

Where did this data come from? CureTogether members have been anonymously sharing symptoms and treatments for almost 2 years now. We anonymized, analyzed, and visualized the data into infographic form to make it more accessible. To thank everyone for their contributions, we’re releasing this result back to the community for free.

This is the sixth in a series of infographics we’ll be publishing over the coming weeks. Stay tuned and please give your feedback or thoughts on this result in the comments below – or write to me at alexandra@curetogether.com.

Please tweet, blog, or pass this along to anyone who can benefit or is interested in Vulvodynia. Thank you!

The webcast will be hosted in 2 spots:

1.       http://www.hhs.gov/open/ or http://videocast.nih.gov/summary.asp?live=9347

2.       Meeting information: http://www.iom.edu/communityhealthdata

3.       HHS Blog Post: http://www.hhs.gov/open/discussion/chdi.html

4.       RWJF Blog Post: http://rwjfblogs.typepad.com/pioneer/2010/05/introducing-data.html

5.       Twitter: #healthapps

It’s a great sign that the government is innovating around open health data. Check it out!