The Big Apple Versus Diabetes

March 1, 2006

Sixteen independent hospital systems jointly save $1.4 million annually.

When the New York City Board of Health decided in 2005 to implement what many call a “diabetes surveillance” program, not many heads turned. The New York Times, The Washington Post and the Associated Press all picked it up, but no one marched on City Hall waving copies of privacy statutes, did they? The funny thing about “for or against” issues is that there are actually four sides of the fence to claim: For, against, straddling the middle and imitating an ostrich.

Sixteen independent hospital systems jointly save $1.4 million annually.

When the New York City Board of Health decided in 2005 to implement what many call a “diabetes surveillance” program, not many heads turned. The New York Times, The Washington Post and the Associated Press all picked it up, but no one marched on City Hall waving copies of privacy statutes, did they? The funny thing about “for or against” issues is that there are actually four sides of the fence to claim: For, against, straddling the middle and imitating an ostrich.

New York City—a government entity of, by and for the people, as well as an employer of many of the people—has ordered about 120 electronically enabled laboratories to forward to the health department for analysis detailed blood sugar test results (HbA1c) that exceed an acceptable level of outcome. The city plans to alert physicians of those patients whose test results signal risk and may even intervene directly with the patients. It also plans to create an HbA1c registry that can be used for monitoring purposes, mapping patterns of glycemic control and surveying for emergence of type 2 diabetes in youngsters.

Dr. Thomas Frieden, New York’s health commissioner, has said that patients concerned about privacy will be able to opt out of the program. Two little problems here: 1) Details of the opt-out option weren’t available when the announcement was made; 2) The program seems to have launched founded upon a presumption of opt-in status for everyone. The news coverage did not include a description of any notification-of-patient procedure.

The “for” side of the house includes public health commissioners and organizations like the American Diabetes Association—no surprise there. The “against” side of the house includes patients rights advocates and attorneys concerned with privacy—no surprise there either. Chances are, a few members from both camps see both sides of the issue and, therefore, straddle the fence. That leaves the ostrich role, and approximately 500,000 people in New York City who have diabetes.

Does the end justify the means? Does the City of New York have the right to require electronic reporting of diabetic test results so it can conduct surveillance, monitor test results, interact with physicians and intervene with patients? For the years of HIPAA-related ballyhoo we endured about patient privacy and security, and for the next 10 or 15 years of ballyhoo we will endure around interoperability, a data-sharing NHIN and patient privacy—can it be this easy for a government entity, or any entity, to confront and possibly breach public trust?

Diabetes is a rampant problem to be sure, but it’s not a public health menace. It is not contagious or communicable; it is not carried by mosquitoes, bees or birds; and it is not the plague. It is an insurance menace, an employer menace, a payer menace and a debilitator of human lives. Perhaps that is what gives New York City the right to install a surveillance program. What comes next—cholesterol levels? Substance abuse? Psoriasis? Participation in marriage counseling?

Anyone who chooses a side—for, against or straddling the middle—can invariably argue in favor of it. Choosing sides isn’t the issue. The issues are patient notification and what seems to be blanket permission—and when, exactly, 500,000 New York City diabetics received it and granted it.

Lemmings still march to the sea. Let’s see what diabetics in the Big Apple do.

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