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Winner of Amgen Patients | Choices | Empowerment Competition Emerging Star of HealthCare Engagement Award
Mayo Clinic Award - LeftA winner of the Mayo Clinic iSpot Competition for Ideas that will Transform HealthcareMayo Clinic Award - R

Stop the Pain! A post for Migraine Sufferers

April 28th, 2009 Alexandra Carmichael Posted in Condition Awareness, Open Source Research 1 Comment »

I wrote a post today about how self-tracking can help migraines at the Quantified Self blog. It talks about research showing headache diaries to be effective in predicting and diagnosing migraine, shares a story of a migraineur who tracks herself, and calls for participants to join the CureTogether migraine study. Please read and share with any loved ones who suffer with migraine pain!

Another recent mention of migraine was by Josh Bernoff of Forrester Research at the recent HealthCamp Boston. One of his slides, shown below, suggests that migraine sufferers and people with chronic pain conditions are most likely to benefit from and to participate in online social networks (top right quadrant).

On the one hand, it’s great to see so much increasing attention on migraine and chronic pain conditions. On the other hand, there’s still a long way to go.

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Users vs. Experts – who to trust for health information?

March 30th, 2009 Alexandra Carmichael Posted in Open Source Research 3 Comments »

h2meetsix_logoIf I had boots, I’d be shaking in them.

In a month I’m headed to Boston to be part of the Health 2.0 conference. I’m presenting CureTogether as part of the “Wiki vs. Expert” panel debate. I haven’t done much speaking in the last 6 years, with small children to care for. But it’s time to jump back in now.

I feel like there are millions of people in pain depending on me, wanting me to be out there trying to do whatever I can to help them. If I were in pain, I’d want someone out there trying to help me.

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It’s an interesting question though. Do you trust fellow patients for health information? Or experienced doctors? Or some combination of the two? Here’s the description of the panel debate from the Health 2.0 agenda:

“User-generated content, especially when created mostly by those with little formal training, has been regarded with deep suspicion by many. But now the concept is taking hold that the crowd itself has wisdom beyond that of its member, and that wisdom might exceed that of any expert or experts.

Two leaders with extremely strong view points (Denise Basow and Dan Hoch) will debate whether and if user-generated content, crowdsourcing and other ways of surfacing content are appropriate for creating and verifying health information. And what does this mean for the traditional roles of clinical trials and evidence-based medicine?

This one will be a real barn-burner, we promise you!
Demonstrations from: CureTogether & Healthwise
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I asked my network of 1200 or so Twitter and Facebook friends what they thought. I had some interesting replies and discussions emerge from patients, doctors, social media advocates, and regular folk:

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Issue #1: Who is an expert?

ePatientDave, a patient advocate with stage IV, Grade 4 renal cell carcinoma, brought up this point. It was also echoed by other friends. It has certainly happened to me that I have walked into some doctors’ offices knowing more about treatment options, possible side effects, and diagnostic criteria than they did.

So patients can certainly be experts. And experts can be patients. But they are overlapping circles – not all patients are experts, and not all experts are patients. Defining an expert as someone with a medical degree therefore seems to have inherent limitations.

A heated debate on this topic was sparked recently at ePatients.net: “Medpedia: Who gets to say what info is reliable?” Medpedia is like Wikipedia, but only doctors can edit the content. The blog post elicited 53 rebellious comments. Patients want to have a voice too.
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Issue #2: What kind of patients?

Dr. Julio Bonis Sanz, an MD-PhD in Spain, raised this question. He differentiates between chronic and acute patients. In his view, chronic patients are more likely to be experts in their disease, and their knowledge can be a valuable complement to medical expertise. Acute patients are likely to have less knowledge about their disease, so the doctor’s experience of having seen many similar cases becomes more important.

This matches my experience as a patient. For my chronic conditions I have done extensive research on my own so I bring suggestions and ideas to the doctor; for acute incidents I tend to rely more on the doctor’s experience.

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Issue #3: Does expert editing overlook valuable outlier data?

At CureTogether we don’t edit or moderate the crowdsourced data that members submit for their conditions, except for obvious errors and duplications. Here’s my worry with expert moderation of user data — I think experts would be likely to censor out “non-standard” outlier data that could yield valuable clues for asking new research questions. Yes, keeping a high signal-to-noise ratio is important, but eliminating all the noise can also be problematic.

Glenn Raines, a social media analyst based in Chicago, contributed eloquently to this discussion. He suggests that how data is collected and reported is an art. Showing patients how to use the data insight for strategies and tactics instead of presenting them with a data dump will be important. Statistics are obviously a critical part of this as well. The power to analyze and find patterns in huge amounts of data, including outlier data, is incredibly valuable. But deciding what statistical methods are relevant and meaningful seems like an art in itself. Perhaps we need to define a new field: artistic statistics?

I think I’d most like to see an open collaboration platform where users and experts can both participate, without editing or censoring each other. Color-coding or ranking comments by reliability, based on community reputation points, is one idea. And full transparency of the commenter’s identity is a must. This would provide a good balance – including everyone but minimizing the noise.

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So who do we trust, users or experts? The answer: it depends. But a collaboration of some kind seems win-win.

Now, to take some deep breaths, remember all the people counting on me, and get myself to Boston next month. I think the debate will be recorded. I’ll post it afterwards and you can see how I did.

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First Crowdsourced Book on Endometriosis Released

March 12th, 2009 Alexandra Carmichael Posted in Books, Health Tracking, Open Source Research, Perspective, Random Company News No Comments »

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/

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First Crowdsourced Women’s Health Book Released

February 25th, 2009 Alexandra Carmichael Posted in Books, Open Source Research, Random Company News No Comments »

We are excited to announce today the release of “Vulvodynia Heroes: 190 Women Share Their Experiences and Treatments.”
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What’s Inside?

190 women share stories, symptoms, and triggers
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/VHeroes

All proceeds from Vulvodynia Heroes go to fund the vulvodynia 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

“The vulvodynia heroes are pioneers not just in investigating their own condition, but in developing self-cure practices that others can follow.” — Gary Wolf, Contributing Editor of Wired, Blogger at The Quantified Self

“Many other women who are suffering will find this very helpful and inspiring.” — Elizabeth Rummer, MSPT, Pelvic Health and Rehabilitation Center, San Francisco

“It’s awesome! I am so impressed with all the work you put into this subject and the insights you make. You’re my hero for being such a confident and constructive voice for vulvodynia. Kudos, kudos to you!” — CureTogether member

“LOVE the book and concept. I was hooked reading it top to bottom” — CureTogether member


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

Thank you for your support!

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First Crowdsourced Health Book to be Released

February 14th, 2009 Alexandra Carmichael Posted in Condition Awareness, Open Source Research, Random Company News, Research Findings 2 Comments »

vulvodynia-heroes-book-cover-smallCureTogether will soon release “Vulvodynia Heroes: 190 Women Share Their Experiences and Treatments”. It’s the first crowdsourced health condition book, about a condition that affects 16% of women at some point in their lives.

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The book has already received a lot of positive feedback from patients, doctors, health 2.0 enthusaists, and researchers. Here are some recent blog posts about it:

Dealing with Pain and Dysfunction: Vulvodynia Heroes

ScienceRoll: First crowdsourced health condition book by CureTogether

Servicing the Chassis: almost famous

Biogeekblog: crowdsourcing + patient empowerment

Tweet by Jen McCabe Gorman: “checking out first condition specific ‘experiential’ author project from CureTogether = awesome”

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More information about the book can be found here. Please help spread the word by blogging or tweeting this link: http://www.curetogether.org/VHeroes

Thank you and Happy V-Day!

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What Will Healthcare Look Like in Years to Come?

January 1st, 2009 Alexandra Carmichael Posted in Open Source Research, Perspective No Comments »

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

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Making Connections

November 11th, 2008 Alexandra Carmichael Posted in Condition Awareness, Open Source Research 7 Comments »

One of the most interesting things we’ve learned so far at CureTogether is how many of the conditions people suggest may actually be related.

Take Fibromyalgia as an example. People who checked off Fibromyalgia symptoms at CureTogether also reported symptoms for the following conditions:
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  • Endometriosis
  • Vulvodynia
  • Discoid Lupus Erthematosus
  • Interstitial Cystitis
  • Irritable Bowel Syndrome
  • Obstructive sleep apnea
  • Pelvic Congestion Syndrome
  • TMJ Disorder
  • Anemia
  • Arthritic Hips
  • Bipolar Disorder
  • Candidiasis
  • Chronic Fatigue Syndrome
  • MCSS
  • Neuropathy

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The fact that Fibromyalgia and these other conditions occur simultaneously in the same bodies is a huge challenge for people living with these conditions, but also an important clue to consider for research.

It’s also helping members directly. One member wrote in to say that it was “interesting” to see TMJ (lockjaw) and endometriosis listed as related conditions. She had both conditions but had never considered that other people might have the same combination or that the two conditions might be connected in some way.

Another example comes from recent news. Researchers at the Fred Hutchinson Cancer Research Center in Seattle reported last week that women who have a history of migraine headaches have a 30% lower risk of developing breast cancer than women who have no migraine history. The link between these two diseases is thought to be the lower estrogen levels that is often found in women with migraines, which also has a protective effect against breast cancer.

Given these examples, it looks like studying the overlap between multiple conditions, what they have in common and where the differences lie, may be a key to finding important insights into how these diseases work and how to treat them. This is step one on a long road of discovery ahead, but what an exciting first step.

If you have one or more related conditions, join in the research process and let us know (anonymously of course!) by posting a comment below or visiting CureTogether’s conditions page and clicking on your conditions. Every connection, every person, every click is a new piece of the puzzle.

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How CureTogether Fits Into Disease Research

October 29th, 2008 Alexandra Carmichael Posted in Open Source Research, Random Company News 2 Comments »

I’m only one person. How can I possibly impact disease research just by checking off what symptoms I have and what treatments I’ve tried?

If you are thinking this, you’re not alone. The idea of finding cures for human diseases seems like such an enormous challenge that one individual person can feel insignificant. People are donating their spare computer cycles to Stanford’s Folding@home research project, walking for cures, and raising awareness on their blogs. But there must be more to do, some way to get research going faster.

At CureTogether, we believe the secrets to understanding and ultimately curing diseases are locked away inside the bodies of each person who has a condition. By asking patients about their experiences, we can put together a large collection of data and look for patterns. This data is called phenotypic data, or health data, and is complementary to the genotypic or genetic data that is starting to be available as well.

A diagram put together by Nature Reviews (Genetics) summarizes the areas of disease research below:
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The relevant part to look at is the green box in the bottom left corner labeled “Association Studies”. This is where CureTogether comes in, and where each individual can help. Association studies basically look for associations, or connections, between different factors. Genome-wide association (GWA) studies have made some impressive discoveries by looking at genome sequences to statistically link genes to different diseases, including Type 2 Diabetes, Parkinson’s, and Crohn’s Disease. The same thing can be done with enough health data.

So far members can report symptoms, treatments, and possible causes of their conditions at CureTogether. In the coming months we will be adding health tracking to let members chart their progress and contribute their information anonymously to the aggregate pool of research data. With enough individuals coming together in this way, we can do association studies on a number of conditions and make valuable discoveries on the road to finding cures. You can make a difference!

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Let’s Measure Ourselves!

October 15th, 2008 Alexandra Carmichael Posted in Open Source Research 1 Comment »


A new trend is emerging. People are measuring things about themselves, storing them online, generating graphs and looking for patterns in their own data. Some people track their baby’s sleep patterns, others track their driving habits, or even their sex life. Monica Hesse reported on this trend in the Washington Post recently.

It’s a phenomenon WIRED editors Kevin Kelly and Gary Wolf call The Quantified Self. They have a regular Meetup group in the San Francisco Bay Area to discuss these ideas and talk about topics like: Personal Genome Sequencing, Lifelogging, Self Experimentation, and Medical Self-Diagnostics.

This is exciting for us at CureTogether because we’re developing our health tracking component based on excellent feedback from our members on what kinds of things they want to track related to their condition. It will be completely anonymous (unless you choose to share your data with your doctor or family/friends). If you have suggestions for what you’d like to track for your condition, please leave a comment below, or write to us.

Wishing everyone a healthy day.

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Open Source Health Research Plan

September 16th, 2008 Alexandra Carmichael Posted in Open Source Research No Comments »

We’ve been thinking a lot at CureTogether about open source health research and how it can work. Our thoughts have coalesced into a plan, which I’ve written up here and summarized below. It was also listed as a featured article here and included on the Lifeboat Foundation blog.

We’d love to hear your ideas in the comments section. How do you see this working?

Summary of the Open Source Health Research Plan

Open source has emerged as a powerful set of principles for solving complex problems
in fields as diverse as education and physical security. With roughly 60 million
Americans suffering from a chronic health condition, traditional research progressing
slowly, and personalized medicine on the horizon, the time is right to apply open source
to health research. Advances in technology enabling cheap, massive data collection
combined with the emerging phenomena of self quantification and crowdsourcing make
this plan feasible today. We can all work together to cure disease, and hereʼs how.
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The Elements of Open Source

The State of Health Research

The Open Source Health Research Plan

  • Step 1: Define the “source”
  • Step 2: Apply the elements
  • Step 3: Develop a platform
  • Step 4: Build community
  • Step 5: Make discoveries

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The Challenges

  • Intellectual Property
  • Privacy and Security
  • Accuracy
  • Awareness
  • Institutional Resistance

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About the Author
Acknowledgements
References
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You can read the whole report here. Please join the discussion and leave your comments below.

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