ENTRIES TAGGED "data commons"

The risks and rewards of a health data commons

John Wilbanks on health data donation, contextual privacy, and open networks.

As I wrote earlier this year in an ebook on data for the public good, while the idea of data as a currency is still in its infancy, it’s important to think about where the future is taking us and our personal data.

If the Obama administration’s smart disclosure initiatives gather steam, more citizens will be able to do more than think about personal data: they’ll be able to access their financial, health, education, or energy data. In the U.S. federal government, the Blue Button initiative, which initially enabled veterans to download personal health data, is now spreading to all federal employees, and it also earned adoption at private institutions like Aetna and Kaiser Permanente. Putting health data to work stands to benefit hundreds of millions of people. The Locker Project, which provides people with the ability to move and store personal data, is another approach to watch.

The promise of more access to personal data, however, is balanced by accompanying risks. Smartphones, tablets, and flash drives, after all, are lost or stolen every day. Given the potential of mhealth, and big data and health care information technology, researchers and policy makers alike are moving forward with their applications. As they do so, conversations and rulemaking about health care privacy will need to take into account not just data collection or retention but context and use.

Put simply, businesses must confront the ethical issues tied to massive aggregation and data analysis. Given that context, Fred Trotter’s post on who owns health data is a crucial read. As Fred highlights, the real issue is not ownership, per se, but “What rights do patients have regarding health care data that refers to them?”

Would, for instance, those rights include the ability to donate personal data to a data commons, much in the same way organs are donated now for research? That question isn’t exactly hypothetical, as the following interview with John Wilbanks highlights.

Wilbanks, a senior fellow at the Kauffman Foundation and director of the Consent to Research Project, has been an advocate for open data and open access for years, including a stint at Creative Commons; a fellowship at the World Wide Web Consortium; and experience in the academic, business, and legislative worlds. Wilbanks will be speaking at the Strata Rx Conference in October.

Our interview, lightly edited for content and clarity, follows.

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