According to a NYTimes story this morning (see below) the city will monitor patients with diabetes. There seem to be a lot of privacy concerns but overall we think this is an excellent idea. You could see some very interesting clusters. Of course, while you wouldn't want to judge only on A1Cs (the best doctors probably see some of the worst patients) it would be helpful to track how people do in various systems. The more information made available at an aggregate level, the better.
December 15, 2005
City Orders Labs to Submit Data From Tests of Diabetics
By MARC SANTORA
As part of a broad new effort to better understand how diabetics manage their illness, the New York City Board of Health is ordering laboratories to pass along detailed information on individual tests that measure blood sugar levels to the city's health department.
It is the first such reporting and tracking effort in the country, and it is being closely watched by public health officials nationwide wrestling with ways to better control the epidemic of diabetes.
An estimated 520,000 adult New Yorkers have been diagnosed with diabetes, according to the health department. It is thought that an additional 265,000 New Yorkers have diabetes, but do not know it. It was the fourth-leading cause of death in the city in 2003, the first time it made it into the top five.
Diabetics must control their blood sugar levels to prevent serious complications from the disease. The city wants the laboratories to report information from what are known as A1c tests, which are more detailed than the daily blood sugar tests patients perform on themselves. In the A1c tests, which diabetics are supposed to have done two to four times a year, a doctor is able to measure the average amount of glucose in the blood over a period of months.
By gathering data on the tests, the city hopes to coordinate intervention programs. Within six months, officials hope to use the information to reach out to local doctors and, in some cases, patients, to urge lifestyle changes and other measures to better control the disease.
"We're confident that this measure will help people with diabetes live longer and healthier lives," said Dr. Thomas R. Frieden, the city health commissioner.
While laboratories have long been required to pass along patient information on infectious diseases like hepatitis, this is the first time public health officials are trying to use similar techniques to control a chronic disease.
However, some critics of the effort worry that it is an invasion of patient privacy, especially since people will not be given the chance to opt out of having their information collected. There is also a fear that the information could find its way into the hands of insurance providers, who could, in turn, use it to discriminate against patients.
"I am shocked and dismayed to hear this news about A1c blood test results being given to the health department without patient knowledge or consent," said Robin Kaigh, a New York lawyer who has tracked medical privacy issues. She added, "In addition, this landmark step will cause other databases of sensitive patient information or disease registries to be seriously contemplated in the future."
In response to such concerns, Dr. Frieden said, "The utmost care will be taken to keep this information secure and confidential while we work toward improving patient care."
The health department, whose board voted unanimously yesterday to begin the program, hopes to collect data on at least 90 percent of those diagnosed with diabetes.
If the effort is successful, the department would collect and analyze data on roughly 500,000 patients, which would require a massive commitment of time and resources.
While many laboratories already have electronic filing systems that would make it easy for them to pass along the information, the city expects to finance the added cost of compiling the data, estimated at $1 million a year. It hopes to get more money for intervention programs through a combination of private and federal sources.