Tuesday night, endorsement #906 on HealthDataRights.org came from a Judy Beckman, who says:

“I agree all the way I cannot get MY records unless I pay for MY records $1.00 per page WHY WHY these are MINE???????????”

Indeed, why? Whose data is it, anyway?

This spring I’ve been learning (slowly) about HIPAA – the immense and complex 1996 Health Information Portability and Accountability act – it’s become increasingly obvious that the law’s intent has just plain gone sour.

I’ve talked to people who were involved in creating it, and they say it just wasn’t supposed to turn out this way. But the way things have unfolded, your right to your data has gotten crushed under regulations that put unresponsive, unconcerned, unmotivated bureaucrats’ needs above your urgent medical needs.

No matter how desperate you might be, they don’t have to give you your data any faster than one month, and if they want, they can take a second month. And they can charge you whatever they want, subject to state laws.

In Regina Holliday’s case, it was 73 cents a page. In Judy’s case, it’s a dollar a page. In Texas, it can be $37 for the first ten pages. And so on.

I think this is revolting, and we should revolt. The law has been perverted, and it stands in the way of empowered patients trying to help their own cause. (And when I say “patients” I always mean caregivers, too. Patients’ rights to self-preservation certainly accrue to the ones trying to provide their care.)

As patient or caregiver, your time will come. It takes years for this industry to budge an inch, so you better speak up now. Add your endorsement to the Health Data Bill of Rights: click here.

Diagnosis: Revolting. Prescription: Revolt.

 

 

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