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Comment by 1996 | Hacker News Reader

1996·

What if you do not want your information exchanged? Or recorded at all?

Information wants to be free so much that it leaks!

Given experian experiance, I would prefer the option to keep a thumbdrive with me. If I lose it? My fault. Exams can be redone. Printouts can be provided. But you can't fix a leak.

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Healthcare providers are unwilling to plug in a thumbdrive from a patient because it could contain malware. Secure online exchange is the only practical approach to health information exchange. Most providers will allow patients to opt out, but this puts your health at risk. Doctors often need to see your historical chart in order to make an accurate diagnosis and prescribe effective treatment. You can't always just redo an exam, test, or imaging study.

I want to opt out of any collection of data - not just the exchange of data. Because the best way to make sure nothing will leak is to have no records in the first place.

I accept all the risk. But there is no freedom to do that - leaving the thumbdrive aside, by just bringing papers that I would keep - not them.

Healthcare providers have to keep records both to deliver effective care and protect themselves against malpractice liability. It is unreasonable of you to expect them not to do so. Those risks aren't yours to accept.

There is utterly nothing you can do to prevent the american heathcare apparatus from obtaining and sharing your heath data. It will be exchanged between your state agency, care provider and insurers constantly. Your insurer will likely de-identify data in the event of a leak. The other two may not (save regulatory requirements) I have first hand experience here.

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