Health Privacy Creates Policy and Technology Challenges

November 14, 2007

secure-public-health-data-center.jpg

Last summer the Wall Street Journal ran a piece about inaccurate data on medical records, which is a common problem. That led WSJ blogger Jacob Goldstein to observe that, when it comes to obtaining health coverage, medical records are the new “credit score.”

He’s absolutely right – although you can argue that, as reporters say, he “buried the lede.” Most people don’t even realize that insurance companies ever see their personal medical records. That’s a significant story. In fact, most people have no idea who sees their medical information or where it goes. I’m not aware of any comprehensive study on the collection and distribution of medical information.

I do recall seeing a research paper on insurance information in the 1980’s that said that the typical medical bill is handled by 25 different people before it is paid or denied. (No citation available, though I’ve tried to track it down – so consider it apocryphal if you must.)

Policy Need #1: Public awareness, debate, and accountability for the sharing of medical information in the claims administration process.

The digitization of medical information is the new “bipartisan” issue of the 21st Century, uniting politicians from Hillary Clinton and John Edwards to Newt Gingrich. And there are compelling reasons for it, whatever shape health care reform eventually takes. But there are risks.

There have been many security breaches of health data involving hundreds of thousands of patients and their medical records, as we’ve discussed before. (The total number of people involved in any type of data breach over a three-year period? 159 million.)

Technology Need #1: A health security coding system for providers and payers that really works. A number of people are working on it, and there’s a university study group tackling the issue, but nobody’s cracked the code yet in a way that these various markets can embrace.

Then there’s the growing area of health data mining. This can be a very good thing, encouraging both research and better services for individuals. Yet the political state of the art lags behind the technology, which keeps developing. Esther Dyson has an attractive solution: informed consent. Answer those online questionnaires and search for medical information all night if you like, she suggests, but insist that your digital content providers allow you to control what is and isn’t shared.

Policy Need #2: Extend informed consent to health technologies of the future, too, such as telemedicine. It’s an elegant, simple solution to a growing problem – a solution that arose in the private sector. But it doesn’t cover all possibilities. That’s why the American Medical Informatics Association offered some suggested guidelines for the secondary uses of medical data that includes public debate and consensus; a health data taxonomy; and a redirection of the debate away from the ownership of data and toward the the topics of access, use, and control.

We’ll have even bigger problems in the future, including the collection and use of genome data. Dyson understands the implications of genomic information on the insurance industry better than the Economist does, but neither addresses the possibility of genomic data being used for, say, pre-employment examinations.

Would Abraham Lincoln ever have become President if the country knew in advance that he had a tendency toward severe depression? And if he hadn’t been, would the country have been better off?

Technology Need #2: A genomic “reader” that is sophisticated enough to categorize an individual’s enhanced abilities as well as their vulnerability to disease.

Policy Need #3: A national debate on the proper uses of genomic data.

So, when do we begin the public discussion of health data and privacy? And who’s going to meet those tech challenges and reap the economic rewards that will follow?

(Image of secure public health data center licensed under Creative Commons from HMS, Inc.)

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3 Responses to “Health Privacy Creates Policy and Technology Challenges”


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