Slashdot Mirror
EHR Privacy Debate Heats Up
CurtMonash writes "The New York Times reports on President-Elect Obama's continued commitment to electronic health records (EHRs), which on the whole are a great idea. The article cites a number of legislative initiatives to deal with the privacy risks of EHRs. That's where things start to go astray. The proposals seem to focus on simply controlling the flow of information, but from a defense-in-depth standpoint, that's not enough. Medical care is full of information waivers, much like EULAs, only with your health at stake. What's more, any information control regime has to have exceptions for medical emergencies — but where legitimate emergencies are routine, socially-engineered fake emergencies can blast security to smithereens. So medical information privacy will never be adequate unless there are strong usage-control rules as well, in areas such as discrimination, marketing, or tabloid-press publication. I've provided some ideas as to how and why that could work well."
One of the problems with EHR is that it potentially follows you your entire life.
If information about your economic status, familiar situation, physical location, customs, etc. Usually becomes unreliable after some time. A leak on those informations slowly loses effect.
Medical information, however, is permanent in many cases. A single leak of a person's data can have fresh information for, literally, a lifetime.
It cuts both ways. With electronic records some cross-checks are possible, such as checking prescribed drugs for interactions, or perhaps even checking that the symtoms and/or treatment really match the diagnosis.
"Education is not the filling of a pail, but the lighting of a fire." -- William Butler Yeats
It also provides accurate records of those mistakes. The lack of medical information following you is going to be FAR more dangerous than a mistake in that record. Picked up on emergency? Can't talk? I hope you don't have any allergies or you could be killed by the response team. Heart condition, diabetes, etc... The number of circumstances where NOT having this information readily available is extremely dangerous outnumber your circumstances by a large factor. Nevermind that EHRs can be corrected and probably far easier than the existing mess of paper records.
In other news, going outside your house is extremely dangerous. For that matter, just staying inside your house is extremely dangerous. Driving to the store for food is extremely dangerous.
The only change I can believe in is what I find in my couch cushions.
USA TODAY, circa 2015:
"It has reported that a laptop has been stolen, allowing thieves to gain access to over 1 million patients' records. Officials lied.... er, reassured the public that no harm has been caused."
"I disapprove of what you say, but I will defend to the death your right to say it." - historian Evelyn Beatrice Hall
The thing is that everyone is an A,B a C or a D.... You have to hire someone.
Read the stories who have had their Credit Records hijacked with false information, and their inability to get loans due to that.
Now imagine the same thing with Medical records, but instead of just inability to get a loan, now you cannot get a job because your employer thinks you suffer from paranoia ("it's right there in your record Mr. Smith, it must be true. I'm sorry but we can't hire you."). For that matter the employer might not even tell you the reason. They might just never call back.
You may think this sounds absurd, but the same thing is happening now with the internet, where employers are digging-up 10-15-20-year old posts or photos from the net, and using them as justification to not hire someone. ("We found this photo of you drinking beer in a frat party in 1995. It's at the psu.edu/alphadelts website. We can't hire you as a teacher. Sorry.")
"I disapprove of what you say, but I will defend to the death your right to say it." - historian Evelyn Beatrice Hall
You're doing it wrong, then. You seem to think that you're third opinion doc is supposed to think up everything de novo? Repeat all the tests the other docs did? Repeat all the other drug trials the other docs did? You would end up in a room with many corridors, all alike. You would go back and forth. And never get out.
While there are certainly times that the second / third / x+1 opinion really looks at things in a totally new and different light and comes up with the one absolutely unusual little tidbit that everyone else has overlooked, the much more usual scenario is that 1) either the problem goes away 2) the problem now is so obvious that even your teenage daughter can figure it out or 3) the other docs have tried several reasonable things and by a process of elimination (rather than deduction or induction), the answer becomes more apparent. You want to keep re inventing the wheel?
You just might want to let the nice trained medical professional skim an accurate and complete history and then let him or her decide what parts of it are useful to the current encounter, perhaps? Maybe?
Well, the danger, if you will, would be that you would have an enormous amount of information in the chart that we would have no idea WTF to with it. I don't think the danger lies in the sequence information - it's the data interpretation which would give you risking data for various ailments. It would likely help you and your primary care doc carefully review what you should be doing in your life, although the conversation likely would be on the order of "get more exercise, eat something healthy occasionally, quit smoking" that we can do quite nicely without your gene sequences. However, you don't want insurance companies to get a hold of it.
That said, the biggest problem with promulgating medical information into the "fog / cloud / Wikipedia" is that OTHER (evil, nasty) people besides medical professionals will get a hold of it. And use the information in ways that doesn't really help you. But not to worry. It's going to happen anyway.
Now, roll up you're sleeve and bend over....
Faster! Faster! Faster would be better!