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Disease registries have flown under clinicians' radar screens


Disease registries are gaining in popularity as electronic tools designed to give physicians clinical support to deliver appropriate care.

IT'S HARD TO HAVE A conversation about healthcare in which the topic of electronic health records (EHRs) doesn't surface. The same can't be said for disease registries, a cousin to the much discussed EHRs, which have until recently flown largely under clinicians' radar.

Disease registries, also known as chronic disease management systems, are electronic tools that provide physicians clinical support so they can deliver appropriate, timely care.

Disease registries enable them to identify their patients with a particular chronic disease-such as diabetes or heart failure-and track patients' care to ensure it follows nationally recognized guidelines. For example, when a registry-listed diabetic patient visits her provider for whatever reason, she may also need a reminder for a foot check or an eye exam. Providers can likewise use registries proactively to contact patients when it is time to schedule an appointment.

Blue Shield of California Foundation (BSCF), the California HealthCare Foundation (CHCF), the Community Clinics Initiative/Tides (CCI), Kaiser Permanente Southern California Region, and The California Endowment (TCE) are funding the initiative. In June, the collaborative announced that the first round of funding will go to 33 community clinics and health centers across California. The clinics will receive up to $40,000 each in matching funds to support software acquisition and training. The collaborative hopes to have disease registries in 80% of the state's community clinics by the end of 2009.

"Studies show that people with chronic conditions get recommended care only about half the time," said Jonah Frohlich, CHCF senior program officer. "Disease registries can be used to track multiple chronic conditions, such as diabetes, hypertension, asthma, and depression. They help monitor progress and ensure better follow-up. The tools also help manage preventive care such as cancer screenings and immunizations."

Disease registries aren't new, but until the last decade they were essentially large population-based reports or paper lists often used by communities or states to track immunization rates or to collect outcomes data for high-risk populations. With the advent of the electronic era, however, a growing number of provider organizations are recognizing the power of registries to improve quality.


In their current incarnation, disease registries can be used as part of-or as a stepping stone toward-an EHR, explains Deborah Schwab, NP, director of health and technology for the BSCF. Registries provide practitioners with clinical support at the point of service so that managing a patient's chronic conditions is an essential part of every visit even if it's not the reason for the encounter.

"Practitioners no longer need to keep tickler files or write notes to themselves on sticky notes to help them track their patients," she says. "With a registry, you know exactly what you need to do with a patient when you go into the exam room."

Although some large, integrated health systems-notably Kaiser Permanente-include registries as part of their EHR, the greatest advocates have been clinics, public hospitals and other organizations that receive government funding. That's because the information gathered and stored in registries enables those institutions to meet the universal data requirements necessary to secure government funding.

"The private sector has to make a business case," Schwab explains. "We can make a public health case."

When the New York City health department launched the Primary Care Information Project, a project to improve population health in disadvantaged communities using health information technology, Assistant Commissioner Farzad Mostashari, MD, says it was difficult to find a commercially available EHR that included registry functionality.

"Disease registries need to be an integral part of any electronic health record," he says. "But they usually aren't because the customers of EHRs are physicians."

He also says physicians want a good scheduling tool and to be able to manage billing. They want to see patients quickly and efficiently.

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