I exchange thoughts with healthcare IT people on a daily basis over at Twitter. So many of them seem perplexed at why we patients look at putting our medical records on the internet with trepidation.
Then along comes this video from Elizabeth Cohen at CNN. In a matter of minutes, she was able to pull up one of her CNN colleague’s medical records, his kids’ records… She could see which doctors they’ve visited, what took place during those meetings…
HIPAA is supposed to protect us from others getting our medical records right?
We don’t want potential employers finding out we have to take meds to control blood pressure or cholesterol every day — it’s not their business!
And consider this scenario: you have no health insurance, or maybe you’ve just been laid off and you’ve lost your insurance. Now you need new insurance. Well guess what? Insurers are looking behind the scenes to find reasons to turn you down. Regardless of how easy it is for others to get your medical records, the Medical Information Bureau makes it easy for insurers anyway.
Here’s my opinion on this issue: I absolutely believe our health records need to be online, both to improve our health and to save money. Both are reason enough to do make medical records accessible digitally.
I do NOT believe patients should be putting their own health information online through Google or Microsoft Health Vault or any of the free applications out there, and I very much object to those large organizations (like the Mayo Clinic) which are getting in bed with these two privacy-sucking behemoths. Those “free” applications are not free. I’ve written about that extensively in the past.
I do believe patients can keep track of their own records, digitally, through any of the pay-for-service PHR (personal health record) programs. You can read about the differences between the free and service fee PHR programs.
Now the government is looking at ways to move all our records online, and they are ready to throw $20 billion into the project. I support that — with this caveat: part of that money must make sure that our records can’t get into the wrong hands — including Elizabeth Cohen’s (Elizabeth, you know I love ya!) — because while Elizabeth is only showing us the potentials, not everyone has our best interests or good motives for doing so.
By the way, Elizabeth takes time in the video to tell us how to protect our records. Take a look. It will serve you well.
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Trisha (and Elizabeth),
Two quick comments: First, we have to find a different term for “online.” The status of “electronically stored information” (health, financial, school, criminal, defense department) is too complicated simply to advocate that it either be “online” or “not online.” The CIA keeps files online, but Elizabeth can’t read them. So, the real issue is, “behind what security?” For insurance and hospital records, the answer is pathetically, “none to speak of.” The problem isn’t whether “online” is good or bad. It’s making vital information usable and available to authorized parties, while keeping it secret from others. This is not technically hard, but it requires an investment that would bite into health industry revenue, so nobody has done it.)
Second, there is no such thing as a PHR. HealthVault and Google just want to be big repositories of raw, unfiltered data, which has very little clinical use. If you HAD a PHR, you could store it anywhere: in HealthVault or your kid’s Playstation, but – oops – you don’t have one. Any you can’t get one from an electronic record vendor, insurance company or doctor (including Kaiser or VA). Nor can you create one as a Martha Stewart project on your own (no doctor will bother looking at non-authenticated information, whether it’s stored on paper, internet or a coffee maker). The real barrier to having portable information at the point of care is still how to create a trustworthy summary from your mountain of records – wherever you keep them.
I want the ability to take portions of my medical records offline, for reasons of privacy, or because they are incorrect. All this efficiency scares me. I’m absolutely certain it will hurt more people than it helps.