How many people do you see posting all of their conditions and the medications they're taking on Facebook? I can't think of any friend who is THAT open.

Also, whether or not people care about their privacy doesn't mean it shouldn't be protected. Not just for themselves, but for their family as well. --Let's say I don't allow my medical information to be used, by my brother does. If he has a genetic disease and a potential employer finds out about it, they might decide not to hire me because there's a chance I may have it as well, which could cause problems if it ended up needing treatment. Laws that prevent discrimination are all well and good, but the problem can be proving the reason they decided not to hire you.

Never said privacy shouldn't be protected, only that it's not exactly valued by BOTH sides of the equation (and of course, YMMV). Up until recently (Omnibus rule), HIPAA had little practical power in that department from both an audit perspective and a fine/mediation perspective. The largest fine levied? It was for inadequate patient access to their own health information, not a security breach.

And even with the new rule, there are currently no regulations surrounding de-identified PHI being used for marketing purposes, research, or sold for whatever other purposes. So now you have data wharehousers like IMS spinning up software dev depts with the specific goal of harvesting patient data.

As far as identity vs membership vs attribute disclosure, I linked to a good study below.

I find it interesting that there are more comments in the average HN healthcare-related thread than on any of the recent NPRM. Hell, there are more comments here than people who actually showed up for FDASIA.

I support regulation in a lot of cases, and feel that that FDA took a reasonable approach to the recent mobile medical device guidelines. What I, and pretty much everyone else (other than the AMA) rails against is the indiscriminate flip flopping of what regulations, standards, etc will be required, and on what time horizon.

Frankly I'm okay with health data being illiquid. Everyone should be absolutely terrified of this data getting into the hands of the same people that try to predict if you are pregnant to sell you crap, or use your credit history or Facebook posts to deny you a job. The future in that direction is "Google Gattaca."

I'm not. The illiquidity is why different healthcare specialists can't share data about me without resorting to a ten finger interface that leads to transcription errors. I want my general practitioner and my spine specialist to be using the same database for records, test, and scans. I'm okay with being embarrassed if it means living longer and better.

I wish I believed we could make a database shared between my GP and my spine specialist without my records also being shared with all insurers, employers, marketing companies, security services, medical researchers, credit rating agencies, and anyone who slips any hospital employee a hundred bucks.

So do I, but given the world as it is, wouldn't you much prefer some idiot marketing guy spamming you on the basis of your medical records, than a screwup in the chain of communication between your GP and spine specialist leaving you crippled or dead?

Yes, of course. But "idiot marketing guy" isn't the worst case scenario, nor is it even the worst plausible scenario. Job loss and inability to get health insurance aren't hypothetical concerns... laws have been written about this because they happen, at scale. While I'm inclined to think the regulations as they stand today are heavy-handed and more expensive than they need to be to get the job done, that doesn't negate the fact that they exist for a reason, a reason that isn't just hypothetical but happened a lot.

Job loss and inability to get health insurance are serious issues, granted. I will suggest the root causes of those need to be tackled for other reasons anyway, starting with the utterly insane practice of having employers involved in health insurance.

It seems almost like the real issue is the insurance schema that makes medical care inaccessible without third-party money.

This notion suggests that the right place to start the kind of big-data medical disruption that could work would be a nation with a weaker or nonexistent medical insurance framework.

It's not just insurance. Companies these days are using credit history as a reason to deny people employment. The credit card companies will hand out this information to almost anyone. Imagine what these folks will do with medical data.

...and the hospitals are using credit card data in their population management models. Oh, you've stopped by the liquor store 3 times this week and now presenting with pancreatitis? Sorry, you are now in our "at risk" billing class.

Just cause I'm feeling particularly paranoid today.

I don't have anything requiring regular medical treatment, but my medical records identify me as someone who has suffered mental health problems, who regularly drinks to excess, who habitually uses cocaine, and who caught an STD in a nazi-themed prostitution orgy while I was a sex tourist in a deprived country.

I'd prefer to retain my privacy and take my chances on the medical miscommunication front, thanks.

I can't help but think that the nazi-themed prostitution orgy part doesn't need to be in the medical records. You should probably talk to your practitioner about logging discretion. ;)

It's the asymmetry of it. A person might have only one GP and one specialist. That is fairly easily managed. It's not good I agree. But it's MANAGEABLE.

Once there is a single large integrated database it's a HUGE target for people to creatively re-interpret the rules such that they can sell access to it. It's also a hacking target too since doctors tend to be a real pain in the ass about collecting all kinds of information that's not medically necessary but perhaps necessary for billing or in case you try not to pay your bill.

Right now this information is federated meaning that there's no one single point of failure. Hospital X's systems might go down, but Hospital Y's systems are still up. That means that unless something REALLY BAD happens across all the hospitals you're not going to die because a computer crashes.

I am far more on-board with good interchange protocols (Diaspora) than with one large centrally managed database (Facebook).

This is a false dichotomy. Can't we have secure, somewhat non-portable EHRs with super strong "Won't release without auth" procedures, or perhaps, as someone else implied, the data should be transfered via sneakernet on USB or similar?

And how common, as a ratio, are crippling medical screwups related to multi-practice miscommunication? I'm sure the absolute number is non-zero, but risks must be weighed. If one person having a crippling issue saves 100,000 people from having their personal data released against their will...

Highly secure systems are possible in theory; we just don't have them today, and we aren't likely to have them tomorrow either.

Crippling medical screwups that could have been prevented by having the right information available at the right time are actually shockingly common. I don't remember the specifics, but I've seen claims to the effect of a five digit annual death toll in the US alone.

I'd like for that database to be something that I control. This is, something that I carry with with me, like a usb stick; and that I have the software/tools to view it. Then I could actually take read though any notes and maybe take a more active role in my health.

I would like that as well, but do you seriously think that would work for most people? Would you want your less technical loved ones to be responsible for the physical security of their data and carry it with them at all times?

I think that's over-thinking it. Medical alert bracelets already exist; I can't imagine it'd be too much challenge to embed a ruggedized USB stick in one, and people generally don't worry about less technical people failing to remember to wear their bracelet.

That's a really good point. It wouldn't take much more miniaturization than what we already have to put that in an earring or something else people wouldn't mind having all the time.

It wouldn't be that much more different then paper medical records. Sure it would enable some interesting attack vectors, but I don't see that to be a compelling reason to not do it. It also wouldn't have to be a mandatory thing. People that are comfortable with it can use it, and those that aren't don't have to. Much like banks, there were (are) lots of people that don't trust back and choose not to use them. The same would be true for something like this.

I don't think rayiner is worried about being embarrassed, he's worried about (for example) not getting a job one day because his private health information has made its way into the hands of a potential employer.

Can't we just make it illegal for an employer to use this information? While not perfect, ask any Black person, it seems preferable to the mess we have today.

If only we had a technology to physically carry around data in our pocket, and selectively share it without uploading it to remote servers...

Great... now your doctor can read the news in your patient file only once/after and while you're in the room. I'm sure that won't affect his or her bill rate.

As it is, I only get to see my doctor for three and a half minutes when I need help, after 5 minutes with a PA, and I don't know if the PA has even had a chance to communicate any of what I told her to the physician, so I have to write everything down lest I forget to repeat something important. Now it sounds like you want to remove the chance they might have actually reviewed my history before I get there, by having me carry it around in my pocket with me?

How about handing it to their receptionist as you check in?

Who can of course store the data on their network, for the duration of your treatment?

Not everything has to be put into global data-silos.

> "Most people don't worry about their data privacy, or else they wouldn't be on FB, take those buzzfeed quizzes, etc."

The first part of the sentence is flawed, so the latter doesn't follow. It implicitly assumes that people even understand how things work (they don't, imho) and therefore can make a sound judgment, based on that knowledge.

For example, I could argue that people simply don't value their future selves (ie 30+yrs), otherwise they wouldn't be eating all this junk food now and never exercising. In some sense that's true, but it's mainly driven by ignorance.

Most people don't understand how data privacy works. A huge number of people don't even realize their Facebook posts can be viewable to the public let alone how that data can be collected, analyzed and shared with third parties. Besides, even the most completely oblivious Facebook users generally don't throw their entire medical history on their wall.