Diabetes and the Government Sponsored Disease Registry of New York City

Registries. Everybody loves ‘em. These data bases promise sorting, insight, planning, action and improvement, right? Government should not only support them, but maybe even sponsor them, right? Use them to create documents with maps, hm?

Not so fast. The April 28 edition of the Archives of Internal Medicine (not online at the time of this posting) has a well written pro vs. con debate on the topic. Specifically, New York City (that's a map displaying the burden of disease in the 5 boroughs) is requiring that all its laboratories forward A1c results and demographic data on all persons with a diagnosis of diabetes mellitus to the NYC Department of Health and Mental Hygiene. Once patients are in the data base, they will be given the ability to ‘opt-out’ of being contacted. If there is no opt-out, patients with an A1c greater than 8% will be alerted by letter and sent education materials. The ordering physicians will also receive alerts along with treatment recommendations.

This is a slight twist on a familiar subject for readers of the Disease Management Care Blog. This debate centers around government sponsored registries. There are still some important lessons.

The ‘pro’ article by Drs. Littenberg and MacLean of the University of Vermont has the all the usual arguments and then some. Registries have been used to conquer other scourges of mankind. They track incidence and prevalence. They enable program budgeting, planning and refinement. They provide insight about the quality of care by geography. They’re part of the Chronic Care Model, and that’s good, right? They also enable the follow-up of individuals. The reason why other registries have a single digit opt-out dropout rate is because patients are good citizens. Registries are expensive and government funding guarantees success.

Dr. Trief and Mr. Ellison rise in opposition to the motion. They note that public health registries were created to help combat communicable infectious disease, not chronic illness. They looked for studies that examined the link between A1c self-awareness and diabetes control and could only find one - and it apparently demonstrated no link existed. Another study is quoted that failed to find an association between the use of a registry and health care utilization among persons with diabetes. What’s more, other studies that gave alerts (for example, fax) to physicians for other conditions failed to show much improvement. They also feel the downside risks also cannot be discounted. The appearance of government intrusion could prompt patients to stay away from their physicians, the New York City registry could be ‘hacked’ and patients may be justified in worrying about how their data could be used against them in the future. While not so clearly stated, they indicate a registry is helpful when it is integrated with other quality enhancing initiatives – which are lacking here.

The DMCB is inclined to agree with the ‘con’ perspective, especially the patient dimensions – and not just because the 'pro' authors are from the People’s Democratic Swedish Republic of Vermont. Being a blog, however, it can’t help adding some other 'con' POVs by opining that while this is a well-meaning initiative, physicians are becoming saturated with prompts, nudges, reminders, alerts, warnings, cautions and alarms from well meaning good-doers using faxes, screen prompts, emails, calls and letters containing guidelines, lists, recommendations, contact information, disclaimers, bar graphs and HIPAA boilerplate. New York City’s foray may provoke registry-fatigue or even blow-back from the docs and what’s worse, give the government sponsored population-care a bad name – not only because stand-alone registries don’t work very well, but because they also annoy docs with false positives.

The DMCB can't tell if the NYC Department of Health understands notions of private-public partnerships, which would allow it to use this otherwise good idea to enable a number of other population-based care options. Does anyone have any insights to share?

In the meantime, the Archives invites readers to submit their own 250 word, clearly labeled “pro” or “con” abstract to their journal. If selected, you’ll be invited to author a full manuscript on the topic for peer review consideration.

Addendum to my post on quotes from the WHCC: My physician colleagues from internal medicine will enjoy a learned description from a surgeon who, during a presentation on the topic of medical devices, shared his insight about a key feature of nanotechnology: ‘it’s really really small.’ Yup.