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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

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 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 anyone 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 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

http://en.wikipedia.org/wiki/Open_source, accessed 8/3/08
http://blip.tv/file/1108326, accessed 8/8/08
http://opensource.org/docs/osd, accessed 8/26/08
http://www.pentaho.org/beekeper, accessed 8/26/08
http://jama.ama-assn.org/cgi/reprint/287/13/1754.pdf, accessed 8/26/08
http://crowdsourcing.typepad.com/cs/2008/08/can-we-crowds-1.html, accessed 8/27/08
http://www.pewinternet.org/PPF/r/222/report_display.asp, accessed 8/29/08
http://www.catb.org/~esr/writings/cathedral-bazaar/cathedral-bazaar/, accessed 8/29/08
http://en.wikipedia.org/wiki/Citizen_science, accessed 8/29/08
http://www.curetogether.com, accessed 8/29/08
http://www.internetworldstats.com/stats.htm, accessed 9/12/08
http://prize4life.blogspot.com/2007/05/prize4life-awards-75000-for-best-ideas.html, accessed 9/12/08