Archive for November 14th, 2007

What Celebrities Can Teach Us About Healthcare: George Clooney Edition

November 14, 2007

clooney-in-syriana.jpg

What do George Clooney, Newt Gingrich, and the Hungarian Communist Party have in common? They each have something to teach us about health care information, privacy, and public confidence.

As most Americans probably know, Clooney had a motorcycle accident a few weeks ago and was treated in a New Jersey hospital. 27 hospital workers – including doctors, nurses, and clerical staff – were later suspended for accessing his medical records. Apparently some of them peddled his medical information to the press, while others took a look just to satisfy their own curiosity. Most of them weren’t involved in his treatment, but they could still view his records anyway.

Clooney generously asked the hospital not to punish the medical workers, but that’s not the point. What Clooney’s experience teaches us is this: A lot of people have access to medical information. The more we use computers to collect and process this information, the more we are at risk for having our privacy invaded.

Those 27 hospital workers were just the tip of the iceberg. Once Clooney’s information left the hospital it went to a number of different organizations, which probably included:

  • his insurance company’s bill processing operation (with some data processed offshore, where there have been serious security breaches and even data blackmailing);
  • his insurance company’s utilization review company, which will determine whether the treatment was appropriate;
  • the insurance company’s payment processing center; his insurance company’s pharmacy utilization review company, for any post-hospitalization prescriptions written;
  • his insurance company’s data analysis group ….

Shall I go on? There’s more. A study I recall from the 1980’s said that an average of 25 people view each medical bill as it makes the transition from the treatment process to payment.

That’s where Newt Gingrich enters the picture. What he shares with all the Democratic Presidential contenders is his strong support for expanded health care informatics, including expanding the use electronic medical records. And they’re right. EMRs are an important tool, even under a single-payer system (although less so).

That’s why Americans want this digitization to continue – but are rightfully concerned about privacy. Privacy breaches of health care data are extremely common – even more than most people realize – affecting hundreds of thousands of people (more here).

It’s surprising that this hasn’t become more of a hot-button political issue. And the next wave of debate will appear when we start address the potential applications of personal genomic information. Esther Dyson discussed the issue of genomes and insurance, but we’ll also be confronted with other potential uses – and misuses – of this data. J. Craig Venter has written a book about his genome, but he doesn’t have to worry about losing out on a job because something in his data makes him look like a poor prospective employee.

That’s where MSZMP, the Hungarian Communist Party, comes in. I was part of a World Bank team that helped Hungary convert its health economy from a factory-based system to one based on public insurance (as in Western Europe, Great Britain, and Denmark). We addressed financing, administration, and IT architecture. But the public was resisting the process. They weren’t enrolling in the new program, they were reluctant to come to the insurance organization’s offices, and there was an simmering undertone of hostility to the program.

We discovered one reason why. The new program headquarters was in a skyscraper located next door to a squat, grim, semi-modern building that had once served as Communist Party headquarters. Built during the post-1956 era of repression, the building held an aura of totalitarianism that permeated the whole neighborhood. That created a backlash of fear and hostility toward the public insurance project.

There is a bright future for health informatics and health genomics, but people will need to trust the institutions that administer them to protect their privacy and use their data appropriately. This should be a national priority, before fear and suspicion replace hope and optimism.

And that’s what George Clooney can teach us about healthcare.

(There’s a different take on the same topic, called “Health Privacy Creates Policy and Technology Challenges,” on The Sentinel Effect.)

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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.)