The NYC A1C Diabetes Registry

Diabetes represents a growing public health crisis in the United States. Millions of Americans suffer from diabetes, and the CDC estimates that there are an additional 8.1 million people (representing 27.8% of all diabetics) who are living undiagnosed. The costs associated with these patients (both direct and indirect) are estimated at nearly $250 billion yearly. As the number of patients increases and costs (both physical and financial) continue to grow, a number of public health departments are investigating novel ways of addressing the problem. One of the most intriguing of these programs is the New York City A1C registry.

In 2006, an amendment to the New York City Health Code made reporting the results of the A1C blood test (also known as HbA1c or glycated hemoglobin) mandatory. This requirement applies to labs that submit electronic lab results to the health department. A1C results are ideal for this sort of registry because of their usefulness as a long-term measure of blood glucose control. Most people are likely familiar with the standard blood glucose test. A blood glucose test is a simple blood test that measures the concentration of glucose in the blood in millimoles per liter (mmol/L). Most individuals with diabetes measure their own blood glucose levels regularly, and results can vary widely throughout a single day. A glycated hemoglobin (A1C) test is different. When blood glucose levels are high for extended periods of time, glucose molecules will attach hemoglobin in a process called glycation. The A1C test measures the percentage of hemoglobin molecules that are glycated, and is an indicator of blood glucose control over the 6-12 week period preceding the test. Generally diabetic patients are advised to keep their A1C levels below 7%. Higher A1C levels are indicative of poor blood glucose control and are associated with complications.

In the NYC A1C Registry, laboratories with a New York State license and those which serve New York City residents are required to report A1C results to the department of health within 24 hours. This will include the test result along with some basic information about the patient and the provider who ordered the test. Initially, the program had both a patient outreach and a provider outreach component. Patients were contacted if they had a high A1C result (greater than 9%) with educational materials about diabetes and reminders to follow up with their physician for continuing care. Additionally, physicians who had patients associated with the A1C registry would receive quarterly mailings that included reports on their patients’ A1C results and comparisons with other New York City providers. As of March 1, 2013, the A1C registry is still active, but mailings have been discontinued. The New York City Public Health Department’s website indicates that updates to the program are in the works, but nothing has been released as of yet.

It is worth noting that the NYC A1C Registry was not without its detractors. Some diabetics and public health officials expressed concern that the registry’s mandatory reporting requirement was a violation of patient privacy. Furthermore, a number of challenges presented themselves as the registry progressed. The need to maintain accurate patient information for outreach purposes meant that data had to be manually reviewed to ensure that letters were sent to the correct person. Another challenge was that the health code mandated reporting of all A1C results. Since an A1C test is often used to screen for diabetes or pre-diabetes, this meant that a number of non-diabetic patients would have been included in the registry. Despite these challenges, many observers believed that the programs benefits outweighed its risks.

Here at Health Monitoring Systems, we think that public health initiatives like the NYC A1C registry are valuable tools in the effort to address the proliferation of diabetes and other chronic diseases. Thanks in part to federal Meaningful Use requirements, more healthcare data than ever is available electronically, and both health departments and healthcare IT companies nationwide are utilizing this data in new and interesting ways to benefit public health. As a long-time leader in syndromic surveillance, we continue to work on new ways to apply our expertise to the field of chronic disease.