I’ve seen very little — okay, absolutely zero — coverage of this story in the blogosphere (we’ve got bigger fish to fry), but it’s an important one, with potentially far-reaching ramifications that deserve extended public discussion.
Last week, The New York Times revealed that health officials are planning to force all medical laboratories in New York City to pass the private medical information of diabetics to the Health Department, with the stated goal of “seeking a better understanding of how well diabetics are managing the disease.” Here is the story, with some added emphasis:
Seeking a better understanding of how well diabetics are managing the disease, New York City health officials have proposed that all laboratories in the city be compelled to pass along to the health department the results of certain tests that measure blood sugar levels.
New York’s is the first health department in the country to propose such a mandate, and health officials say the information would provide them with the most extensive system in the nation for tracking control of the disease.
While requirements that medical laboratories pass along information on infectious diseases such as hepatitis are common, this effort would be the first time a similar step was used on such a wide scale to address a chronic disease.
Controlling the level of sugar in the blood is essential to preventing complications from diabetes, which has emerged in recent years as one of the most serious health threats in the city.
The information that the health department wants reported comes from what are known as A1c tests. These tests, which are not the same as the daily blood sugar tests that patients perform on themselves, measure the average amount of glucose in the blood over the several months. City officials said they hoped to use the data to coordinate intervention programs, where they would work with doctors to get patients better care.
“This has never been done anywhere in the country,” said Dr. Diana K. Berger, the medical director of the city’s diabetes prevention and control program. “Surveillance and intervention are essential if we are going to deal with this epidemic.”
The move comes as the number of diabetics in the city continues to rise. An estimated 520,000 adult New Yorkers have diabetes, according to the health department. It is thought that an additional 265,000 New Yorkers have diabetes without knowing it. In 2003, it was the fourth leading cause of death in the city, the first time it had made it into the top five. The leading killers were heart disease, cancer and influenza/pneumonia.
People with diabetes should get A1c tests two to four times a year, but Dr. Berger said that many people do not. Others, she said, get the test too often, because there is often no continuity of care, meaning that as patients change doctors they get new and unnecessary tests.
The city hopes to collect data on at least 90 percent of those who know they have diabetes through the data passed on by the laboratories. That would mean the department would collect and analyze millions of test results and keep information on roughly 500,000 patients.
“It is not something that is simple,” said Dr. Thomas R. Frieden, the city’s health commissioner. “But it is something we feel that we have to do.”
Many laboratories already have electronic filing systems in place to report other health information, so adding the A1c tests would not be a burden, Dr. Frieden said. The city would pick up the added cost of compiling the data, estimated to be $1 million to $2 million a year. The department would likely seek private or federal funding for intervention programs.
In the past, technological hurdles and privacy concerns have prevented the collection of test results. One common fear is that insurance companies could get the data and use it to discriminate against sick patients, raising rates or denying them coverage.
Dr. Frieden said lawyers at the department crafted explicit language regarding the reporting to ensure that the only people outside the department who would see a person’s test results would be the clinician and the patient. The American Diabetes Association was satisfied that patient privacy could be maintained and supports the measure, according to the department.
There will be a public hearing on the issue in August, and the Board of Health could pass the measure as early as September.
But collecting data is only one step in combating the disease. In addition to getting a better understanding of where the disease is not being properly controlled, the information will help health officials reach people at greater risk of getting diabetes through more aggressive intervention programs.
Dr. Berger said the first area they hope to target is the South Bronx, where about 18 percent of the people have diabetes. The new data will allow health officials to map very specific geographic areas to focus on, she said.
Although the data collected by the department will include the patients’ names, health officials hope to work with the doctors to try to introduce better methods of control instead of going to the patients directly, which some of them might see as intrusive.
Forgive me if I seem a little thick, but it seems to me that the Health Department is saying that they need this information to find out where the disease is not being controlled. They are also saying that they already know exactly where the disease is not being controlled.
If the Department wants to get a sense of how many undiagnosed diabetics exist in the general population, or in a targeted segment of the general population, let it conduct a study in which participants would be aware that, by participating, they relinquish their right to privacy in exchange for monetary compensation. The control group would be composed of people who know they have diabetes; the test group would consist of members of the general population who do not identify themselves as diabetics.
If the Department wants doctors to do a better job of diagnosing and treating diabetes, let it educate doctors about ways that they can better diagnose and treat diabetes.
If the Department absolutely needs this information, it can get it without patient names attached. By looking at which doctor’s office the tests came from, it could figure out which group of doctors and patients are most in need of a government-sponsored re-education campaign.
I believe that many deaths attributed to other causes, such as heart disease, are really due to diabetes. It is a serious health problem that needs much more publicity, and considerably more public funding.
But not this kind of publicity, or this kind of public funding. There is simply no compelling reason to compromise patient privacy in order to improve the lives of diabetics.
The rationale behind the New York City Health Department’s case for this move is the essence of Big Brother paternalism: your government knows what is best for you. This serious health threat warrants an exception from our conventional boundaries around patient privacy. You can trust them to keep this information away from prying eyes.
So, uncontrolled diabetics of the Bronx, prepare to relinquish your privacy as you know it. And put down that fried chicken leg! Unhand that Hershey bar! Put on your leotard, and engage in our state-approved calisthenics program.
And smile! Your country compels you to do so!
A sudden hot sweat had broken out all over Winston’s body. His face remained completely inscrutable. Never show dismay! Never show resentment! A single flicker of the eyes could give you away. He stood watching while the instructress raised her arms above her head and — one could not say gracefully, but with remarkable neatness and efficiency — bent over and tucked the first joint of her fingers under her toes.
“There, comrades! that’s how I want to see you doing it. Watch me again. I’m thirty-nine and I’ve had four children. Now look.” She bent over again. “You see my knees aren’t bent. You can all do it if you want to,” she added as she straightened herself up. “Anyone under forty-five is perfectly capable of touching his toes. We don’t all have the privilege of fighting in the front line, but at least we can all keep fit. Remember our boys on the Malabar front! And the sailors in the Floating Fortresses! Just think what they have to put up with. Now try again. That’s better, comrade, that’s much better,” she added encouragingly as Winston, with a violent lunge, succeeded in touching his toes with his knees unbent, for the first time in several years.”
6 Comments on "You’re Not Trying Hard Enough"
publicorgtheory:
I’m mixed on this one, Matt. I think more and better data are key to providing the best care possible, but I think you set out some good work-arounds on that. I can’t figure out the need for the names and individual information. I don’t automatically assume sinister motives on the part of the city (nor, for that matter, on the part of the insurance companies, but that’s a whole different conversation), and I generally don’t give bureaucracies credit for being able to get it together to do much good or bad, at least intentionally. Authentically evil plots in organizations are a rarity, in my opinion.
I do think diabetes is an epidemic, but I’m not sure how my social security number might help to curb it.
And by the way, if social security weren’t around anymore, would we still have social security numbers?
howard:
chilling. I agree (on a very personal note) that diabetes is a horrible, horrible disease, as are many others, but like you, I can’t see the advantage gained by the sharing of such specific info from people’s medical files. Raw stats should suffice without spilling everyone’s personal info, right?
jess:
no, we’d have another bloody bank account number to memorize.
The Heretik:
That is simply astounding. Last week a national bill on privacy and medical records was in the Senate. So much stuff going on, Matt. Give it your best shot.
Suzy Shedd:
Is it just my imagination or is there a real flavor of ,”We’re going to FIND those diabetics and we’re going to MAKE them do this right,”? I agree data collection is important; I also agree that names attached is nonsense. All Matt’s points are very well made. And, as Matt suggested, if we want better diagnosis, then doctors have to be better trained. As someone who is trying to prevent becoming a Type II diabetic, I had to talk my health care provider into giving me the Hemoglobin A1C test; she didn’t see what I was concerned about. Duh! Why not collect data on how physicians screen for, identify, and treat diabetes BEFORE collecting all the patient data?
Lisa:
I see it all. First, we’ll help Big Bidness (as Molly Ivins calls it) by making sure any employer/insurer knows they’re already sick. Hey, maybe they won’t even be able to get a job, cause you know diabetics take breaks to check their levels and maybe drink some juice. Damn them! Only smokers are allowed frequent breaks, cause we know they won’t be around long enough to be a burden to our group plan. Next, we’ll sterilize them so they can’t have children that might be genetically inclined to diabetes; we don’t want their employers/insurers to be burdened with an actual sick person. How can an insurance company make a profit if they cover people who are sick as well as healthy ones? No, no; only those who won’t use the benefits are eligible for them. Got to maximize profits! Ken Lay taught us all that.
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