NYC Mandates Reporting of Diabetes Test Results
Correction Nov. 7, 2007
A few corrections to the audio of this story: Patients do know that the testing is being done. It is the New York City Board of Health — not the city council — that is requiring labs to forward test results to the city health department. Also, test results — not medical records — will be retained in health department files.
JACKI LYDEN, host:
From NPR News, this is ALL THINGS CONSIDERED. I'm Jacki Lyden.
Here's a story with a moral question. Is it more important for the state to manage chronic illnesses or for doctors to protect their patients' right to privacy?
New York City's health department is requiring labs to report the results of blood sugar tests of diabetes patients to make sure they're managing their illnesses. This is without the knowledge of the patients. It's the first large-scale intervention of a public health department in managing a chronic disease.
NPR's Brenda Wilson reports.
BRENDA WILSON: Diabetes can be managed with exercise and diet to keep blood sugar levels low. And the levels can be monitored with what is called an A1C test.
But New York's health commissioner, Dr. Tom Frieden, says most patients don't bother to find out even if they get tested.
Dr. THOMAS FRIEDEN (Commissioner, New York State Department of Health): Doctors have thousands of patients and most doctors are stuck in the paper age. The patients' results come back to a paper chart and there they sit.
WILSON: Which means most people don't know when the condition is out of control.
Dr. FRIEDEN: What we're learning about are the tens of thousands of people who have blood sugar levels that are so high that their risk of going blind, having a leg amputation, going on to kidney dialysis or having a stroke or heart attack are sky high. And for many of them, nobody is doing anything about it.
WILSON: Diabetes is the fifth leading cause of death in New York City, which has an estimated 800,000 diabetics, and the medical and hospitalization costs are adding up to hundreds of millions of dollars.
So Frieden got the city council to pass a law requiring laboratories to forward the results of all medical tests along with the patient's name and address to the city health department.
Dr. FRIEDEN: It allows us to target services. It allows us to work with doctor's offices, health centers, hospitals to change the way they practice, to improve the care they give to people living with diabetes.
Dr. DEBORAH PEEL (Founder, Patient Privacy Right): If you've got patients that are not responding well to treatment and you're not paying attention to their blood sugar as a physician, that's malpractice. You can't get a bad test result and ignore it.
WILSON: Dr. Deborah Peel is a physician in Austin, Texas, a psychiatrist. She says collecting more information won't necessarily help patients who are not being well-served by the medical system. There are bigger problems.
Dr. PEEL: Can they afford to get to see the doctor? Can they afford transportation? Is it difficult to get appointments to see the physician or to get treatment? Are the medications expensive? Can they afford and can they prepare the right kinds of food. These are the sort of things that make diabetes hard to manage.
WILSON: And she says, patients who are worried about privacy are even more likely to avoid the doctor. Peel is the founder of Patient Privacy Rights.
Dr. PEEL: Some of the biggest complaints that we have, most frequent question is, I was applying for a job and I was asked to let the company have access to my medical records and then they say to us, is that legal? I don't think that it's legal, but this is a widespread practice.
WILSON: Under the federal patient privacy rule, the disclosure of medical information to employers is not legal. But legal experts say it's done anyway. And nobody's stopping it.
In New York, patients can choose not to participate in the diabetes registry, but the medical records will still be on file under the patient's name and address. Frieden says the agency goes to extraordinary lengths to protect that information.
That's why this registry is not allowed to even at the patient's request. Share information with any one other than the patient themselves or the patient's treating physician.
WILSON: The dean of Georgetown University Law School, Larry Gosten, has sat on committees which review practices that jeopardize patient privacy right. And he says, the New York Registry doesn't.
Professor LARRY GOSTEN (Dean, Georgetown University Law): There's no indication that there's going to be a serious invasion of individual liberties and every indication that it's going to help this community. You know, I sit around in meetings and I hear usually white middle-class people say, but, wait a minute, what about the civil liberties of this poor neighborhood or this poor population? And I have to scratch my head because I think what about all of the disabling disease and early death that goes on in these communities? And we just can't turn our back on that.
WILSON: Currently, New York City is conducting a pilot study using the registry in the South Bronx, a borough in New York City with the greatest number of complications from uncontrolled diabetes. In the next month or so, patients will start receiving a letter from the city health department in the doctor's name, advising them to make an appointment because their blood sugar level is high.
And at events of those notices, Dr. Nelly Boma(ph), a supervisor of physicians at community health centers in the South Bronx, has already began to put in practice new Health Department guidelines for diabetes treatment. She can already see the difference.
Dr. NELLY BOMA: We were depending a lot on single testing which just gives you your blood sugar for the day or for that period. Once we now said everybody has to have A1C levels three to four times a year that we were able to know from that data, see how poorly we have done.
WILSON: A1C is a marker for how well blood sugar is being controlled over a period of months. Just 13 percent of health center patients have out-out-control blood sugar levels as opposed to the 36 percent before the registry.
Dr. BOMA: You would get testimonies like no one ever told me that. Oh is that what it meant? Oh, I never knew that. Oh.
WILSON: For many, the diabetes registry is just another step after the smoking ban and the ban on trans fat and now, calorie listing on restaurant menus towards the nanny state, a characterization that hardly seems to trouble Commissioner Frieden, New York City's doctor.
Dr. FRIEDEN: People have an absolute right to privacy. They have an absolute right to accept or reject any services that are offered. The role of government is to try to make the default choice, what people do if they just go with the flow healthier.
WILSON: Even if New Yorkers have no other choice but to do the right thing, Dr. Frieden acknowledges that won't entirely make up for a broken down health system that has overwhelmed by people with chronic diseases.
Brenda Wilson, NPR News.
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