Open (Health) Data


Well, since Josh Ruxin's thoughts on private sector strategies in medical management were so popular it is clear that the RevMinds community is hungry for additional perspective on healthcare as a nexus of multidisciplinary action. As I mentioned in my follow-up post, data and health care (specifically data portability within medical records) is a topic that has bubbled up to the foreground of the open data movement. Medical records are an interesting topic as they represent the administrative process that Ruxin is so bent on overhauling and also provoke questions of ownership and patient-agency that transcend the public vs. private health care debate. With this in mind, I've collected a few links related to this topic:

  • Google health is a well known example of a medical information centralization service. Launched for public use in spring of 2008, the service promises to store patient information "securely and privately" while providing the patient with the ability to determine what is shared and with whom. Given Google's dominance of so many spheres, many users may not feel comfortable in handing over this additional sensitive information to the corporation. Privacy issues notwithstanding, an interesting technical note regarding Google Health is that the API for the service is related to the Continuity of Care Record, a patient health summary/XML standard that can be read by any Electronic Health Record (EHR) application.
  • Earlier this year there was a public call for Health Data Rights that mobilized around the ability of patients to "own their data, source where it originated, take possession of this information and share it." Tim O'Reilly described the importance of the statement of principle as follows: "We may not yet have any idea what the exact format of an open health record system will look like, but we don't need to. If we establish the underlying principle of open exchange, the marketplace can sort out the details."

Even an examination of data ends up referring back to the marketplace—this seems the inevitable outcome of any conversation about healthcare. It goes without say that open source thinking and data ownership are definitely going to factor into this vital public conversation but it certainly remains to be seen exactly which forces will "sort out the details."

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Well, in the last year or so Google did so many wrong things with data that was supposed to be private (and other things, like closing a gmail account that received by accident a mail from a bank) that i wouldn't trust them with my email address, much less with my health data.

Hi Paladin,

Google is not a knight in shining armor, they definitely have their interests and inconsistencies. However, look what they have done with cheap, accessible mapping software (and street view) - who else is organized enough, or could potentially capitalize on health data like Google? It is easy to critique them, but they are a visible example of the type of corporation we might see leading the charge towards health data interoperability - for better and worse.

In 2003, the first human genome was sequenced for $ 2.3 billion. Now the cost of whole genome sequencing is around $ 5000. In the near future every individual will get whole genome analysis for under $1000. That means a lot of data for every individual. Combined with novel data mining technologies ( and recorded health care information, all gene, disease and drug information will be dechiphered in 1-2 years. Another 7 years is enough for clinical confirmation.

Is it going to be on the good site of the force on the public domain or on dark side of the power on big-pharma ? That is the question.