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. Twenty-seven 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 1980s 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.)