Mistrust of motives hampers health IT

Mistrust of motives hampers health IT

Summary: The key to protecting privacy is to eliminate the motive for violating it.


The failure of computerization to launch in health IT is one of the great mysteries of our time. (Image from Wikipedia.)

Computers run our cars, they manage our markets, and increasingly they're in the medical devices that keep us alive.

But go to any doctor and you're still going to fill out a paper form. Get referred to a second doctor and you will probably find a second form. And on and on. The cost of managing this paper helps keeps medicine mired in the 20th century.

Having covered  this beat since July, 2007,  I have heard many theories. Complexity, government action, and government inaction are the most common.

But I have found mistrust of motives to be much more prevalent.

The most common motive in the U.S. health care system is the profit motive. Everyone wants to make more money. Doctors, hospitals, device makers, drug makers, and insurers are all united in their search for profit.

But profit is a pretty base motive.

Health care, at its heart, is a struggle between life and death. Passionate people of all sorts are drawn to that struggle. Their motives are often absolute, and in the contradictions between absolutes others' worthy motives can be seen as evil.

Take drug company marketing for instance.

In every other industry it is common practice for manufacturers to track sales channels. You want to know how retailers are performing and, if they are not, offer them help to get on track.

(Image of junk mail from Wikipedia.)

In medicine doctors are the retailers. Their prescriptions are filled at pharmacies, which break bulk for manufacturers, turning big bottles of powerful pills into little bottles with instructions and warnings.

Customer relationship management (CRM) software mines the data of pharmacists to learn prescribing patterns among the retail outlets, which drug company "detail men" then try to fix.

In a business sense it's all perfectly innocent. But those are medical records, so in trying to change the patterns of Doctor X, the detail men are trying to change the care of Patients A, B, and C.

Some doctors believe this is interference in their work. But a U.S. Appeals Court has just ruled Vermont can't stop it.

Ever since Latanya Sweeney and UT-Austin researchers showed, early this year, that identities of Netflix subscribers in "anonymous" records can be teased out using software, privacy advocates have been on the warpath, insisting that any use of data in medical studies is a privacy violation.

But there's an assumption in these complaints, namely that researchers, drug companies, or any other economic actor cares about your lumbago, or any of your other personal medical conditions.

They don't. Just because you can track how many tubes of toothpaste remain on a WalMart shelf doesn't mean you care about the person walking out the front door with a tube in their bag.

Not as an individual. Only as a dollar sign. Junk mail doesn't come to your door because the sender cares about you. They only want your money. They have identified you as a prospect. They will measure your decision, and those of others, as data.

If WalMart has some idea of your age, income and psychographic profile, that can inform marketing of toothpaste to people who are like you. The only interest is in following the money.

The same thing is true in medical studies, like those released by the Texas State Health Services to medical researchers of all kinds. Just because identities may, in theory, be teased-out of that data through considerable effort, doesn't make the release of that data a Fourth Amendment violation.

Researchers aren't interested in individuals, only numbers. They have no motive to know who you are.

There are companies with a motivation to tease identifies out of anonymous data. Employers have one, and insurers have one, because health insurance today is risk-rated. That is, people who are likely to become sick pay more for insurance than those who are presumed to be healthy.

The key to protecting privacy, then, is to eliminate the motive for violating it. It's not to halt medical or market research with claims which assume false motives on the part of such researchers. To me, that's Luddism, and I don't mind saying so.

Unfortunately this distrust of motives can infect me as well as others. Does the fact that privacy advocacy winds up halting the use of medical data make privacy advocates Luddites?  I am wrong to assume so. I apologize for ever having done so, even though that may be the result of such advocacy.

But until everyone in health care deals with their deep-seated mistrust of others' motives in this business, health IT will continue to struggle uphill.

Topics: IT Employment, CXO, Health, Legal

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  • RE: Mistrust of motives hampers health IT

    "Researchers aren?t interested in individuals, only numbers. They have no motive to know who you are."

    It depends what they are "researching". And it is indeed all about the money. "Researchers" need to know who you are so they can market to you, and not necessarily just medications. If you have a diagnosis of diabetes, you will get coupons for special foods and if you have a diagnosis of urinary incontinence, you will get junk mail full of adult diapers offers, and if your hobby is biking, you may get a bunch of bicycle offers, and if you take Viagra and are single, you may get some interesting offers too. If you were diagnosed with late stage cancer, perhaps some funeral homes ads would be in order and if you ever told your psychiatrist about some strange fantasies you had when you were 13, you may get a visit from law enforcement when the next perverted crime occurs in your neighborhood.
    Medical records contain this, and much more personal information, which is why the value of this data is unmeasurable to most industry "players".

    "The key to protecting privacy, then, is to eliminate the motive for violating it."
    This is what they used to say about protecting young women from sexual assault.

    The key to protecting anything is to put good security in place and to pass appropriate legislation and to enforce it.
    All they really need to do is make the indiscriminate selling of data, identified or not, a federal crime punishable by imprisonment and huge fines and enforce it.

    Legitimate clinical research is good and should be encouraged. After all this is one of the main reasons for HIT. EHRs and HIE are imperative, IMHO, and what is slowing them down is this inexplicable inability to legislate for the electronic age.

    Let me ask you a simple question: Would you be OK with a marketing company pulling a truck behind your doctor's office and loading copies of all his paper charts? Not to worry, they have a scanner that blacks out all the names and addresses and such....
    Margalit Gur-Arie
    • RE: Mistrust of motives hampers health IT

      @Margalit Gur-Arie Yes. As I noted it all goes to motive. What are they trying to do with the data -- not records but data?

      The assumption that something nefarious is always going on is a big problem. Make doing nefarious things illegal, throw those who do it in jail (even CEOs), and stop trying to stand in the way of software progress is my feeling.
      • RE: Mistrust of motives hampers health IT

        Agreed 100%. So why don't they make it illegal?
        Margalit Gur-Arie
      • RE: Mistrust of motives hampers health IT

        @DanaBlankenhorn Enforcement of existing criminal statutes would deter much more than the creation of law unique to an industry.
      • RE: Mistrust of motives hampers health IT

        You work for a drug company or are mentally challenged,
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  • RE: Mistrust of motives hampers health IT

    "The key to protecting privacy, then, is to eliminate the motive for violating it."
  • RE: Mistrust of motives hampers health IT

    The key to protecting privacy is not eliminating motive. Your assuming that there is some sort of profit motive behind snooping. How do you eliminate the people that snoop for curiosity?

    While eliminating some of the motives would be a good idea, it is also important to give the individual or his/her proxy total control over their own records. Doctors should only have access to the records they create and to those which the individual assigns the rights. Until adequate security, patient controls and usage tracking are available, I will not support digital record sharing.
  • Myth- "My medical records would be less secure with Healthcare IS"

    Ok guys, let us shine some light into this dark place. We have a very broad set of laws already on the books called HIPAA. Then we have the mandate for the Electronic Medical Record, which is one reason there are some very interesting people out there trying to roll back Health Care Reform. So let's bust some Myths... "If my medical record is in a database, any hacker will be able to get it." The truth is that %99 of HIPAA violations involve people, paper, telelphones, and copy machines. Doctors, nurses, clerical staff, insurance staff, and even the janitors can compromise your Protected Health Information, without leaving any evidence behind that they did so. All the have to do is look at the paper. So irrational fear of hackers is not valid; rational fear that someone on the staff or another patient will violate you privacy is valid. When PHI is in an EMR, there is an audit trail when it is accessed, providing evidence if it has been compromised. So Myth Busted.
    Myth #2 "It's too expensive and will drive health care costs up." Liar, Liar , pants on fire!!! All that charting takes time; labor costs will be lower. Records will actually be accessable, and easily audited, so fraud will be easier to find and most important, prove. That will certainly save the taxpayers money by helping fight Medicare and Medicaid fraud, which by the way is usually not committed by the people actually ON Medicare and Medicaid, but by the doctors and medical suppliers who think that it is their god-given right to rip off the goverment. Finally, medical mistakes are more easily found and corrected when the documentation is in electronic form, since there will be no reason we can't read the doctors writing. Preventing mistakes, accurate record keeping, and accurate medical record should bring down malpractice premiums and judgements. Bad doctors will no longer be able to hide, and good doctors won't be constantly afraid of what is essentially blackmail. Myth Busted!
    Myth #3- "Anyone drug company and salesman can get access to my PHI" With the EMR, demographic, research, and outcome data can be "sanitized" of PHI. That means that they can find out how many men of a particular age, weight, race, or religion are using Viagra, with out ever knowing that it is you. Myth Busted.
    • RE: Mistrust of motives hampers health IT

      @dukeofsj@... well i do agree with your point . that is what i have also explain in my post at http://www.surgical-blog.com/
  • PS: People lose their jobs, pay civil judgements, and go to jail for...

    looking up someones Protected Health Information. If you think it's worth your job and a couple years in jail to sell the tabloids info about Linsey Lohan's bowel movements, then you probably shouldn't be working there in the first place. With EMR, unless you are a top flight hacker, %99 of the time, we can find you and bounce your butt off the pavement as we drag you into court.
  • RE: Mistrust of motives hampers health IT

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