Google Co-Founders on Healthcare: “Thanks, But No Thanks”

And if the patient survives, but has a debilitating condition that was a side-effect of that risky drug, then claims he was going to survive anyway and now his life has a shattered quality because the doctor prescribed an drug that hadn't been fully cleared yet? It's not as black and white as you're painting it, and drugs are not always silver bullets that save your life and send you back to playing the violin like the virtuoso you once were.

Conversely, if you didn't have that regulation, you'd have medication with a much lower quality - more people dying, and more negative side-effects for the ones who survived. Plenty of drugs look promising at the outset, then turn out to have serious issues.

That is, if health data were anonymized, and was done right, and was made unable to be correlated with any other data, it likely would be sufficient. It's when you start allowing it to be correlated with personally identifiable things that it ceases to be anonymous.

That is, sure, let's take a case where you have a super rare genetic disorder. That, combined with the time in 2005 where you broke your leg, is sufficient to distinguish you from every other person in the country. In short, you have a unique health profile.

So what? Unless there is further information, that can't be traced to you. As an example, it's when we start saying "Ah, and the person is receiving treatment at (facility)" that we now know where you live. It's when we start correlating it with usernames that we start getting an internet trail. It's when we start correlating those with forum profiles that we get a real name, and now we know who you are.

The only other way someone could match that profile with you, is to have access to the profile, and to know you personally. Otherwise it links nowhere.

I agree the risk is huge; people don't do it right. But anonymous health profiles are -not- in and of themselves dangerous; it's when details linking them to further information leaks out that it's a problem.

But, pragmatically, while yes it would be incredibly hard...has anyone here read the rights they're signing away when they go to the doctor? Does everyone here trust every system a doctor uses, every system a health insurer uses, and every system used by marketers and researchers that the feds -do- allow to have access to this data? The real risk of Google would be that they could correlate it with so many other things about you; but the health insurers still have your medical history combined with all your PII.

I've worked with people involved in HIV vaccine trials overseas and, in fact, things really don't change as much as you might think.

The basic tenant "first do no harm" is ingrained at an many different ethical, institutional and legal levels that it isn't like you can, say, justify a more risky vaccine in an area with a higher risk for HIV or whatever.

In fact trials have been cut short and research into entire vectors (ie the cold virus used as a transport for the HIV related material) cut off when trials in Africa started to appear (statistically) to be slightly harmful in any way.

I feel this is a good thing. Scientists and medical people holding themselves to this high standard is the reason the anti-vaccine crowd really doesn't have a leg to stand on.

The P in HIPAA stands for Portability. At it's heart, the act was supposed to guarantee patients have access to their health information, not bring health data liquidity to it's knees.

This is Jonathan Bush, of Athena, testifying (read: ranting) a couple weeks ago about regulations and innovation in healthcare. The big take away is that healthcare specifically sets these rules with incredibly high barriers of entry, and then at the last minute does a complete 180. We've seen it every step of the way with the EHR incentive program, CEHRT, ICD-10, payment reimbursement, etc. https://www.youtube.com/watch?v=CekfvGDiab8