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

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.

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!

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.

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?

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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.

The power to find cures is in the crowd.

We are at a unique point in history where people can come together to solve unsolvable problems, especially when it comes to health. Scientific advances and plummeting technology costs make it easy today to get massive amounts of data, genetic or otherwise, relatively cheaply. This deluge of information is making health research increasingly into an information-based science rather than a wet-lab-dependent one.

Put that together with the phenomenon of crowdsourcing, which Wired editor Jeff Howe defines as “the application of Open Source principles to fields outside of software”, and what do you get? Wiki-science. And it actually works surprisingly well. According to Innocentive, 30% of problems deemed unsolvable by internal R&D teams can be solved when opened up to researchers around the world, basically anyone with access to the web.

At CureTogether, we are opening health research up to everyone. We don’t lock away aggregate data for our own profit, we open it up - as much as people want to share, and anonymously - so it can be put to maximum use on the path to finding cures. We see patients and researchers coming together, sharing knowledge, joining forces, and making discoveries that reduce pain and suffering for so many millions out there.

We believe in the power of open source health research. If you do too, please join us today.