Privacy fears slow health IT push
Summary: Until we settle on a unique identifier for all personal databases privacy is unachievable.
CORRECTION: Deborah Peel insists she has always supported health reform.
Fears about the leakage of private health data have kept health an IT backwater since the HIPAA law went into effect.
Why a system where you can't find records and have to re-enter them each time you see a new doctor is considered safer than an automated system remains beyond me. But that's what many doctors believe.
They're acting as data hoarders, no different in their way from kids who download songs from BitTorrent because they fear losing access to them. But the Man wants to put the kids in jail. He coddles the doctor.
Today rules for the Nationwide Health Information Network (NHIN) are being held up by a dispute over whether day-to-day governance will be done through private groups or government rules, said National Coordinator for Health IT David Blumenthal (below).
Questions about implementing privacy and security are delaying recommendations from a Tiger Team tasked with advising the government policy committee which is creating the meaningful use rules.
At the same time activists like Dr. Deborah Peel (above) hover around the media, claiming that EHRs are all "designed for backdoor data mining," deliberately confusing the use of anonymous data in studies with the seizure of individual records by employers or insurers.
Turning records into numbers is the best way of finding out what works in medicine. That's not a privacy violation. Getting fired because your employer found you were seeing a shrink on your own dime is a privacy violation, but that's what EHR systems are designed to prevent, not enable.
Dr. Peel opposes health reform, but rReform is the answer to the problem. Only by eliminating the incentive employers and insurers have to peek at records, by having everyone pay equivalently into a common pool, can we gain a measure of medical privacy.
This is not to say that privacy and security are unimportant. They are. But we have a lot more to fear from insiders putting a few gigabytes of data onto a USB stick and selling that stick to an identity theft ring than from what's in the medical records.
Medical records are financial records first.
The answer to that question lies in secure identity, in better keys that keep both our financial and health records safely under our control. Until this key is in our hand, until we settle on a unique identifier for all personal databases, then privacy is unachievable. We'll be going around-and-around until 2020 looks like 1999 does now.
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RE: Privacy fears slow health IT push
RE: Privacy fears slow health IT push
RE: Privacy fears slow health IT push
RE: Privacy fears slow health IT push
RE: Privacy fears slow health IT push
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RE: Privacy fears slow health IT push
You've stepped in it now Dana....
RE: Privacy fears slow health IT push
RE: Privacy fears slow health IT push
RE: Privacy fears slow health IT push
I'm willing to admit publicly and privately I screwed up. My actions were wrong. There may be reasons but there is no excuse.
RE: Privacy fears slow health IT push
Actually many people are totally unaware of how much medical data is already being mined.. 95% of all pharmacy records are uploaded to third party benefits firms each night and then repacked with the AMA physician data base (18% of the AMA's income) and then resold to pharma drug reps. This allows drug companies to target doctors to change their prescribing patterns with little real benefit to patients. When some states attempted to limit this practice the multi-billion dollar drug benefit firms sued in an attempt to stop the laws.
We are also now seeing "free" EHR's that put pharma ads right on each page of your medical record or deliver "ads" during the check in process directly to patients and essentially put a drug rep in the exam room with the patient and in the doctors office when s/he is working.
There are also over 1 million pregnancies terminated in this country each year and mental health treatment is a huge risk factor for many people. Anti-depressants are now the number one prescribed medication in the US and yet many employers and even voters continue to discriminate against people being treated for a mental health illness (Dr Peel is a psychiatrist btw) Both of these patient populations have very legitimate fears about having their medical information shared with anyone other then their treating providers but in the 30% of large employers who are self insured they frequently use your medical history for promotions and over seas assignments.
Finally - anyone who understands data is very well aware that you cannot really de-identify data - (you can however add noise to the data to make it useful for research) and there are growing concerns around secondary uses of your data.
Life insurance companies already use your RX history as a surrogate for your medical history (if you are taking chantrax to stop smoking you might instead be tagged with being treated for depression) and be unable to obtain or pay higher rates. Many financial firms (mortgage and credit) are also looking into using your prescription history to asses your credit risk. A very legitimate concern is that some day soon if you have a spouse who is treated for cancer that you will not be able to get a mortgage because you are now in a higher risk category due to a health problem that might bankrupt you.
The solution isn't always an either or approach to privacy and security (too different topics) but an informed decision making process. One of the roles of Government is to look out for the most vulnerable amongst us - those with debilitating medical conditions and protect their rights at the same time we move forward. A more appropriate approach might be to address and mitigate the fears without attacking the messengers.
RE: Privacy fears slow health IT push
"Three companies -- IMS Health, SDI and Source Healthcare Analytics -- had sued over the law, which was enacted in July 2009. The companies gather data on drugs ordered by doctors and sell it to pharmaceutical manufacturers."
RE: Privacy fears slow health IT push
RE: Privacy fears slow health IT push
RE: Privacy fears slow health IT push
Do you really believe these companies use your records to improve your health? No, they use YOUR records to discriminate against you and to improve their bottom lines.
A solution
RE: Privacy fears slow health IT push
RE: Privacy fears slow health IT push
Not really. But if they were, where is the NFIN (F - for Financial)? And if there was one suggested, would you support it?
There are two distinct issues here:
One is data security to guard against breach and theft. This is a technology issue that can be rectified with better technology.
The other is Privacy. This is a legal issue and until legislation is passed to protect people's privacy in an electronic age, this issue will not go away.
Not many people have problems with proper clinical research which will benefit all of us in the long run. However, "research" is not defined anywhere and therefore marketing research or any other perverse version of research is perfectly legal if the data is "de-identified" and the law allows one to hire an "expert" to decide if the de-identification is acceptable.
Then there is the ownership issue. Why is it that those who own the servers on which the "data" resides also own the "data" to do with it as they please? To go back to your financial assertion, does the bank own my valuables just because I store them in their safe deposit box?
The common knowledge is that there are mountains of money to be made from all this data. Pure clinical research does not usually yield fortunes, so how exactly are people planning on "monetizing" this data? And if all we want to do with the data is clinical research for the public good, why is it so hard to acknowledge that and legislate around it?
For the record, I support health reform and I wish it would have gone much farther than it did towards universal health care and at least some public option. I also support EHR adoption and health information exchange, but I want it done right from the get go precisely because I want it to be successful.
Disagree that it is a "technolgy issue"
My point is that the technology to prevent these breaches was already there. It is the humans that failed and continue to fail, not the technology.
RE: Privacy fears slow health IT push