Can One Build an Ethical Medical Data Store?
June 10, 2012
There are many ways to gather data, some more scrupulous then others. Gaining permission to share personal history is the more ethical, but according to the article How to Build a Mountain of Patient Data: Don’t Ask for Permission, there’s a professional health loophole in regards to information sharing.
“One of the reasons Indiana has been successful is we haven’t over-regulated the private sector. It’s allowed the market to blossom. We were able to do a lot of that work when there was less scrutiny.”
Opinion, something about saying ‘private sector’ followed by ‘more work with less scrutiny’ just seems wrong.
According to Molly Butters of Indiana Health Information Exchange:
“The result is many patients may not know they’ve been included. And if they are aware, opting out is hard: Patients must be granted permission by their health care providers to opt out of the exchange. The number of people who opt out is few.”
Indiana has around 6.5 million residents over all. Indiana Health Information Exchange along with their exchanges, have requisitioned the medical information of 4.5 million of those residents.
Building a data store is necessary, but not at the cost of privacy. It seems Indiana has added the clause ‘can be shared throughout health industry’ to the HIPAA Act. How many professional librarians are comfortable with this approach? How many traditional publishers? How many of the Facebook generation? Let’s think about that… None, some or all?
Jennifer Shockley, 10, 2012
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