Mistrust of motives hampers health IT

The key to protecting privacy is to eliminate the motive for violating it.
Written by Dana Blankenhorn, Inactive

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.

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