A new pilot program announced by the New York City Department of Health and Mental Hygiene proposes to use electronic medical records to track and aggressively manage the treatment of people with diabetes.

Officials say the disease is approaching epidemic proportions in the city - yet it is not infectious or communicable. Critics of the program fear it poses a threat to individual privacy.

For years, the reporting of certain cases, known as reportable and notifiable diseases, has been a legally mandated duty for physicians and health care providers. The intent has always been to advise authorities on diseases that may be infectious or communicable and a threat to the public's health. Examples include sexually transmitted diseases, rubella, tuberculosis, tetanus, measles and food-borne illnesses.

What is unique about this diabetes program is the mandate for all 127 laboratories in the city connected to the Electronic Clinical Laboratory Reporting System (ECLRS) to assess lab work to identify an individual's A1c hemoglobin blood sugar level. The plan will turn diabetes into a reportable disease, allowing the city government to be informed of lab work for all individuals who use one of the targeted labs. The health department says it will use the lab results to develop a diabetic patient registry that will help the city develop intervention and treatment projects with local clinicians. According to city and state authorities, the project will allow better management of the city's 530,000 diabetics and enable the government to reach out to the more than 250,000 individuals who are believed to have the disease but are undiagnosed.

According to early reports, individuals will receive a letter from the health department notifying them if their blood sugar level exceeds a certain predetermined level, along with educational and resource materials. Physicians will receive a quarterly report of their patients stratified by glycemic control as well as recommendations for managing patients with diabetes.

The plan seems overly obtrusive to some medical privacy advocates. They question how individuals will benefit from city or state knowledge that they are diabetic? They also say that patient-physician confidentiality will be compromised, and the city will become a de facto case manager for such newly discovered individuals.

However, physicians understand the complexity in improving the health of their diabetic patients, a challenge that often depends on an individual adhering to a diet and assessing and self-administering appropriate medications.

According to Steven Lamm, M.D., chair of the Men's Health Channel for Revolution Health Group and New York City internist, "Successful management of diabetes requires a great patient. Improving compliance with the medical care plan can reduce heart attacks, blindness, and kidney failure. The improved health and well-being of an individual will transfer into tremendous reductions in societal health care costs."

Undoubtedly, a proactive approach to improving the health of diabetics is a prudent endeavor, although many question the apparent mandatory and unsolicited involvement of patients and physicians. "A pilot program with patients who agree to this level of intrusion, ensuring privacy, could further demonstrate the enormous value of tight diabetic control," says Lamm.

Even if the privacy considerations can be worked out, the implementation of the agenda will prove challenging, according to experts.

"It's an interesting program. I am sure someone's heart is in the right place, but any success will be based on how it is executed - and the devil is in the details," says Lyle Berkowitz, M.D., co-chair of the Asthma Channel for Revolution Health Group's Medical Advisory Board.

The database will be used to compile tests results - along with clinician and patient information - that can be used for surveillance purposes. Patients would receive a letter if their HbA1c levels are greater than 8 percent (nearly 60 percent of diabetics have glucose levels above 7 percent). All patients would be tracked on how well they were managing their diabetes, and their physicians would receive alerts and advice from the city on how best to manage their diabetic patients.

Some critics fear the health information could be used to deny insurance coverage or raise premiums, while others fear a backlash from local physicians.

Berkowitz is not concerned that insurers will use the information to increase rates or deny claims. "Insurance companies already have access to this type of information. When a patient signs a contract with an insurance company, she gives permission to view any clinical information or records. And if an individual wants to get an insurance policy, she provides her own medical history and gives permission to the insurance company to look at any old records. In other words, the insurance companies don't need the government's help in getting this information - they already do it legally. And then there are additional laws regulating what they can do with this data."

A major concern is that the program, although well-intended, is misguided.

"Unfortunately, involuntary patient notification strategies rarely work to manage complex diseases like diabetes," says Berkowitz. "True disease management usually requires a much more intense effort (for example, nurses calling patients and helping them with compliance). With respect to notifying physicians, this has been a difficult exercise in the past. The most effective physician-notification strategies seem to involve data comparison (that is, comparing a physician to her colleagues seems to motivate her to do better if needed) and rewards based on achieving some sort of goal, rather than merely informing the physician that a particular patient is not meeting some standards. In fact, we usually already know which of our patients are having trouble managing their diabetes. What we have difficulty with is changing their behavior."

Berkowitz believes that many individuals with diabetes have been instructed on how to care for themselves, but their problem is complying with the care plan, because this involves significant lifestyle changes and/or financial resources. "For the patients who do come in regularly, the problem is not that we have failed to instruct them on what to do, but that those patients are non-compliant for a variety of reasons. And for those that do not come in, they are even less compliant. Therefore, simple alerts and advice from the government are unlikely to significantly change the outcomes unless they are backed up by some fairly robust services."

The Health Insurance Portability and Accountability Act of 1996 was signed into law to improve health insurance portability, prevent fraud and misuse, and simplify health care administration. Fundamental to the act was that electronic transmissions of health information be safeguarded to afford individual privacy. Critics say that some new health care initiatives, while couched in the auspices of improving patient care, threaten to endanger the delicate balance between individual privacy and the public's health.

This Article is from MyDNA.com

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