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Will privacy keep Health 2.0 from the starting gate?

Posted on March 5, 2008October 24, 2024 by Dissent

Business journalist Dana Blankenhorn writes on ZDNet:

[…]

Just two weeks ago the World Privacy Forum, ironically also based in San Diego, came out with two warnings about Personal Health Records (PHRs) which made them appear to be a tragedy waiting to happen.

PHRs, once placed online, are not covered by HIPAA, the forum said, since they’re yours and you can share your data with who you will. They can be subpoened, they could be sold, and insurance companies may troll them looking for policies to cancel, the forum added.

It put out a consumer advisory filled with warnings, recommending in the end that you maintain your PHR off-line.

In many ways the dangers of PHRs are like those of any social networking site, like Facebook, or any Web site at all. I’ve compromised my own privacy many times right here, talking about my own problems and those of family members.

What I’ve gotten from that is validation, community, an acceptance of my own humanity, and some very good friends. Between that and isolation there is no comparison, at least for me.

Conference attendees also focused on the positives of networking. Sites like Alzinfo give Alzheimer’s families a community. CareSeek launched a doctors’ rating service at the conference.

Fact is, any insurance company determined to find your health status has plenty of tools it can use to profile you, even if you don’t place a PHR online or visit a Health 2.0 site.

Our transaction records are like a trail of bread crumbs, the main difference with Health 2.0 being that we become easier to trace because we can no longer stand being alone.

You don’t think about it until you, or someone you love, faces a diagnosis. Suddenly information, and comfort, matter a lot more than theoretical privacy.

That’s what the Health 2.0 start-ups are banking on. Are they right to bank on it, or wrong?

Source – ZDNet

Category: Health Data

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