The air is buzzing. People are talking about health more than ever before, and it's good news for patients. Technology is making it possible for patients to take an active role in "participatory medicine", partnering with their doctors to decide on the best course of action for their health.

Over the next few months, these 6 events will bring together patients, researchers, doctors, and health enthusiasts. Discussions, partnerships, and innovations will emerge. Keep your eye on these, and attend if you can! .

1. TEDMED - October 27-30, http://www.tedmed.com

The medical version of the legendary TED conferences. From the TEDMED site: "The fifth in a series created by Marc Hodosh and Richard Saul Wurman, TEDMED celebrates conversations that demonstrate the intersection and connections between all things medical and healthcare related: from personal health to public health, devices to design and Hollywood to the hospital." This year's speakers include Dean Kamen, Craig Venter, Sanjay Gupta and Goldie Hawn. .

2. Transform - September 13-15, http://centerforinnovation.mayo.edu/transform

A collaborative symposium at The Mayo Clinic Center for Innovation. From the Transform site: "Transform brings together a dynamic group of speakers and participants from inside and outside the health care industry to explore the intersections between human experience, health care delivery and new business models. Join us to imagine and create innovative ways to deliver a better health care experience in a 21st century world." .

3. Health 2.0 - October 6-7, http://www.health2con.com

Next-generation health companies and patient advocates converge. From the Health 2.0 site: "With more than a hundred speakers and hundreds of new healthcare demos and technologies on display on stage and in the exhibit hall, you'll get a sweeping overview of the ways that information technology and the web are changing healthcare in areas from online search to health focused online communities and social networks." .

4. Web Strategies for Health Communication - July 19-24, http://webstrategiesforhealth.com

A new course by Dr. Lisa Gualtieri at Tufts University School of Medicine. From the Web Strategies site: "The Summer Institute on Web Strategies for Health Communication covers how to develop and implement a Web strategy to drive a health organization’s online presence, specifically the processes for selecting, using, managing, and evaluating the effectiveness of Web technologies for health communication." .

5. Singularity University - July-August, http://singularityu.org

Graduate studies program started by Ray Kurzweil and Peter Diamandis. From the Singularity University site: "Singularity University aims to assemble, educate and inspire a cadre of leaders who strive to understand and facilitate the development of exponentially advancing technologies and apply, focus and guide these tools to address humanity’s grand challenges." Biotechnology and Medicine are two of the tracks they offer. .

6. Regenstrief Conference - Sept 23-35, http://www.regenstrief.org/conferences/2009

An invitation-only unconference, but one to watch. From the Regenstrief site: "The theme for this year's conference is Open Health Methodologies. Participants include: Clay Shirky (open source), Dr. Roni Zeiger (Google Health), and Mark Surman (Mozilla)." .

If you aren't able to attend, let us know what you think are the most important issues in health today and we'll make sure to represent your ideas. Good things will come from all the buzz - the future of health care and health research is bright.

Over 300 Women Share Experiences, Treatments for Painful, Common Chronic Conditions

CureTogether, a Health 2.0 Startup based in Silicon Valley, has released the first crowdsourced books on vulvodynia and endometriosis: two common, poorly understood conditions causing daily pain for millions of women. Assembled from the input of 190 and 137 women living with these respective conditions, “Vulvodynia Heroes” and “Endometriosis Heroes” are the product of an ongoing online research study at http://www.curetogether.com.

“Patients came together and decided what symptoms and treatments they wanted to track. They went on to diligently gather detailed, quantitative data on their bodies and experiences,” said Alexandra Carmichael, co-Founder of CureTogether. “The hope of this book is to spread awareness, reach out to people in pain who may not have heard of endometriosis, and increase interest and funding for future research.”

“These heroes are pioneers not just in investigating their own condition, but in developing self-cure practices that others can follow.”, said Gary Wolf, Contributing Editor of Wired and Blogger at The Quantified Self. “Many other women who are suffering will find this very helpful and inspiring,” said Elizabeth Rummer, MSPT at the Pelvic Health and Rehabilitation Center in San Francisco. A patient with endometriosis added, “This is great. I am just starting to really appreciate what awesome power CureTogether can have.”

Endometriosis is a painful chronic condition that affects 5-10% of women, and vulvodynia affects up to 16% of women at some point in their lives. They are two of the most active condition communities at CureTogether, with information about symptoms, treatments, and causes added by over 300 women. The books are available at http://www.curetogether.com/VHeroes and http://www.curetogether.com/EHeroes.

About CureTogether

CureTogether launched in 2008 to help people anonymously track and compare health data — to better understand their bodies, make more informed treatment decisions and contribute data to research. Starting with 3 conditions (Migraine, Endometriosis and Vulvodynia), its members have since expanded it to support 228 conditions.

*Please note that the information in Vulvodynia Heroes and Endometriosis Heroes and at CureTogether.com does not constitute medical advice.

For more information, please contact Alexandra Carmichael at 650-533-2163 or alexandra@curetogether.com

Tracking your health is a growing phenomenon. People have historically measured and recorded their health using simple tools: a pencil, paper, a watch and a scale. But with custom spreadsheets, streaming wifi gadgets, and a new generation of people open to sharing information, this tracking is moving online. Pew Internet reports that 70-80% of Internet users go online for health reasons, and Health 2.0 websites are popping up to meet the demand.

David Shatto, an online health enthusiast, wrote in to CureTogether, a health-tracking website, with a common question: "I'm 'healthy' but would be interested in tracking my health online. Not sure what this means, or what a 'healthy' person should track. What do you recommend?"

There are probably as many answers to this question as there are people who track themselves. The basic measure that apply to most people are:
    - sleep
    - weight
    - calories
    - exercise

People who have an illness or condition will also measure things like pain levels, pain frequency, temperature, blood pressure, day of cycle (for women), and results of blood and other biometric tests. Athletes track heart rate, distance, time, speed, location, reps, and other workout-related measures.

Another answer to this question comes from Karina, who writes on Facebook: "It's just something I do, and need to do, and it's part of my life. So, in a nutshell, on most days I write down what I ate and drank, how many steps I walked, when I went to bed and when I woke up, my workouts and my pain/medication/treatments. I also write down various comments about meditative activities and, if it's extreme, my mood."

David's question is being asked by the media too. Thomas Goetz, deputy editor of Wired Magazine, writes about it in his blog The Decision Tree. Jamin Brophy-Warren recently wrote about the phenomenon of personal data collection in the Wall Street Journal, calling it the "New Examined Life". Writers and visionaries Kevin Kelly and Gary Wolf have started a growing movement called The Quantified Self, which holds monthly meetings about self-tracking activities and devices. And self-experimenters like David Ewing Duncan (aka "Experimental Man") and Seth Roberts (of the "Shangri-La Diet") are writing books about their experiences.

In the end, what to track really depends on what each person wants to get out of it:
    - Greater self-awareness and a way to stick to New Year's resolutions?
    - Comparing data to other self-trackers to see where you fit on the health curve?
    - Contributing health data to research into finding cures for chronic conditions?

Based on answers to these questions, you can come up with your own list of things to track, or take some of the ideas listed above. Whatever the reason, tracking is the new thing to do online and can be a great way to optimize and improve your health.

Alexandra Carmichael is co-founder of CureTogether, a Mountain View, CA startup that launched in 2008 to help people optimize their health by anonymously comparing symptoms, treatments, and health data. Its members track their health online and share their experience with 186 different health conditions. She is also the author of The Collective Well and Ecnalab blogs, and a guest blogger at the Quantified Self.

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 here’s how.

The Elements of Open Source

Open source is a production model that enables communities of people with common interests to work together productively with minimal centralized control. Fundamental elements of an open source approach include:

• “source” (goods, ideas, code) that is accessible to everyone

• openness

• collaboration and community

• recognition for contributions

• transparency

• democratization of the tools necessary to contribute

Examples of successfully implemented open source methodologies include the operating system Linux, the web browser Mozilla Firefox, and the citizen journalism website Digg. Eric Raymond’s classic essay The Cathedral and the Bazaar uses the example of Linux to derive lessons to be applied for effective open source projects.

The State of Health Research

Health research has historically been done in academic or corporate laboratories and funded by government granting agencies and foundations. Scientists work towards discoveries in the areas of genetic/environmental disease risk factors, drug treatments, surgical advances, and medical devices. Disease research is often done using animals or other organisms as rough predictors of human systems.

With the advent of bioinformatics, genome sequencing, and health data streaming, research today has increasingly become an informational, computational endeavor. This, combined with the speed and reach of the Internet, opens it up for individuals to participate in such things as:

• massive data analysis

• quantitative and qualitative assessments

• statistical pattern finding

• online, international research studies

Anyone with enough science knowledge and computational power now has the ability to contribute to research advances, outside of any institution. Examples of such citizen science have historically been popular in the fields of bird counting, water monitoring, and astronomy applications like searching for interstellar dust. Citizen health research is still in its infancy, with “experimental man” David Ewing Duncan and parents like Hugh Rienhoff pioneering first attempts.

The Open Source Health Research Plan

Step 1: Define the “source”

The openly accessible source for health research can be made up of:

• survey questions/instruments/assessments

• ideas for new treatments or treatment protocols

• health data

• algorithms to find patterns

• patterns found in data

• user interface designs

Step 2: Apply the elements

Openness

Opening up the health data part of this source to any interested person will have to be done in an aggregate, anonymized way to protect the privacy and security of individuals who have contributed sensitive health and medical information.

Collaboration and Community

Collaboration, community, and recognition can be achieved through open forums and a social network of international researchers, where any interested person can classify as a researcher and be rated according to their level of expertise or the value they add to the community.

Recognition for Contributions

Contributing members can be recognized in the community and given special status, based on the number of contributions they make and the value of their contributions as evaluated by other members of the community.

Transparency

Transparency can take the form of an Open Source Health Research Roadmap to keep everyone in alignment with a long-term vision, as well as a defect tracking system and open communication among all parties - administrators, researchers, and patients.

Democratization of the Tools Necessary to Contribute

Anyone with access to a computer and the Internet will be able to contribute to this research. With nearly 1.5 billion people using the Internet today, or 22% of the global population, almost anyone who wants to be a part of this research is equipped with the tools needed to do so.

Step 3: Develop a platform

The platform for open source health research will enable people to:

• stream their health data, to be added to the anonymous, open aggregate

• collaborate and connect with each other

• analyze data for patterns

• publish their findings

• fund specific research projects

• raise awareness for their condition and take action to defeat it

Step 4: Build community

The next step is to build a community of people dedicated to making open source health research work. This vision should be so compelling to people in daily pain and their loved ones that the response and motivation should be much greater than for other citizen science projects, where the primary motivations are curiosity and serving a greater good. While these are important and commendable motivations, the biological desire to help oneself and ones’ closest family is a strong driving force.

Communities can be built around specific diseases, but open communication between disease communities should be encouraged, to facilitate sharing and cross-pollination of ideas. Online social networks and community building tools can be used, targeting disease groups and open source enthusiasts.

Step 5: Make discoveries

With this framework for open source health research, people who are suffering can come to play an active part in making discoveries to help themselves. The untapped expertise and knowledge of traditional and non-traditional scientists can be a large factor in accelerating cures.

A likely source of discoveries is people with PhD’s in unrelated disciplines, who often bring a diverse perspective that can illuminate an insight. An example of this is Dr. Giorgia Sgargetta of Italy, who has solved several Innocentive challenges in different fields. She recently won a prize for her contribution to finding a biomarker for ALS, and she has no background in ALS research at all.

The Challenges

The concept of open source health research does pose substantial challenges that will need to be overcome before the framework can be built and the benefits realized.

Intellectual Property

Who owns the discoveries made?

Privacy and Security

How to protect people’s rights to control access to their personal health information?

How to protect the data from falling into the wrong hands?

Accuracy

How to screen out valuable or “expert” contributions from the rest?

How to ensure data collected from patients is accurate?

Awareness

How to achieve the critical mass necessary in each disease vertical to be able to make any meaningful discoveries?

Institutional Resistance

How to handle potential resistance from foundations, the medical establishment, granting agencies, academic institutions, journals and the scientific community?

How to bring everyone together towards a common goal?

Many of these challenges have been solved for similar situations in other fields, so

further research into analogous frameworks would be useful here.

The promise is significant, the plan is here: Open Source Health Research is on its way.

About the Author

Alexandra Carmichael co-founded CureTogether in January 2008 to focus on open source health research. Her bio can be found here or here, and information on CureTogether can be found here. Write to Alexandra at alexandra@curetogether.com.

Acknowledgements

Thanks to Daniel Reda, Melanie Swan, Christine Peterson, Jeff Howe, Gary Wolf, and Kevin Kelly for helpful feedback and discussion and/or inspiring thought leadership. It’s an honor to be surrounded by such pioneering minds.

References

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