Americans still fear storage of their health data

Health data carries the same risks as financial data, but its collection and use holds the promise for even more benefits. Population studies become both easier and more valid as we collect more data.
Written by Dana Blankenhorn, Inactive

One of the most dispiriting aspects of covering health reform over the last year has been how Americans all say they support the goals yet uniformly oppose any move toward achieving them.

Take data, for instance.

Data is the driver of reform. Data is a big driver of research. With data, we can know what works and what does not, what is worth doing.

We can also cut the costs of doing it by billions of dollars.

Aren't you sick of having to give the same information to every medical professional you meet, and the paperwork following every doctor visit?

But apparently we're still scared of the first necessity, putting the data into a computer so it can be used. Larry Ponemon is sounding this alarm with a survey saying Americans deeply distrust anyone but their doctor having their health records.

Forbes wants you to know this is all some horrible plot by the Obama Administration. But while only 27% said they trust the government to hold data on them, the same level of distrust exists concerning Google, Microsoft and General Electric.

We don't trust anyone.

Ponemon called this a roadblock to the government's efforts at automating health IT, but they're also a challenge to industry. Although it's hard to see what could be done -- the money has been appropriated, and there are "sticks" in the appropriation that will cut reimbursements if the money isn't taken or is wasted.

There are risks to putting data in a computer. The data can be stolen. When it's our data we freak out over these risks. But we demand the benefits even while we're freaking out.

Do you really want to return to an age where you needed cash for every transaction, and had to get that cash at a bank, or write out a check? I don't. So we accept the risks of having banks, credit processors, and even credit agencies holding vast banks of data on us. We just get upset when the data is misused. We have learned to be rational about it.

Health data carries the same risks, but its collection and use holds the promise for even more benefits. After all, your credit card won't extend your life. But population studies are driving important changes in medicine, and they become both easier and more valid as we collect more data.

My biggest problem with health data security is that employers and insurers have every incentive to steal it and use it against me. Health reform -- even the watered-down Senate plan -- would end that. (But let's not get started on that.)

The word for this anti-data attitude is neo-Luddism. Two centuries ago gangs of workers went around England smashing automated looms in protest of the Industrial Revolution. (Anyone want to go back to weaving cloth by hand?)

The current cynicism seems to have the same aim.  It needs to be seen as a threat, not just to IT but to technology in general.

Technologists, engineers, scientists, and IT professionals need to understand this fact and push back against it. Progress remains controversial.

This post was originally published on Smartplanet.com

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