American College of Physicians: Internal Medicine — Doctors for Adults ®


Patient registries: a key step to quality improvement

With a growing array of tools and support services available, practices don't need an EHR to get started

From the September ACP Observer, copyright 2005 by the American College of Physicians.

By Bonnie Darves

As the pay-for-performance movement gathers steam in both the public and private sectors, internists are finding out that if they want to participate, they'll need to embrace patient registries as a starting point.

What is a patient registry? In its simplest form, a registry is a list of all the patients in a physician's practice who share some characteristic, such as a certain condition or medication regimen. By tracking patients by a disease state like diabetes, the thinking goes, physicians can better organize those patients' care. Although the most rudimentary form of registry would be a pencil-and-paper tabulation, most registries are generated by a computer application that captures and manages patient information.

At their most sophisticated level, registries can go much further, producing detailed reports on both individual patients and patient populations. They can provide not only reminders—to check a patient's hemoglobin A1c level, for example—but also identify patients who aren't receiving a certain level of care. As a result, patient registries are a key element in collecting and tracking how well you're meeting treatment goals.

Until recently, registries have been the domain of pharmaceutical companies, which use them for longterm data on drug use and side effects, and of quality improvement organizations (QIOs).

While much of the QIO-developed registry software is now largely in the public domain, practicing internists who want to adopt this technology as their own may find that the programming expertise needed is beyond their scope. And while several electronic health record (EHR) products incorporate registry tools, the price tag of these packages—and concerns about their return on investment—makes them cost prohibitive for many solo and small internal medicine practices.

Despite these barriers, a growing number of internal medicine groups is taking the leap--or at least taking a look. Many internists are finding that they can cobble together simple registries that take some staff or physician time to maintain.

"Most internists today view the registry as a bridge before they obtain a full EHR, and there's no question that it helps quality improvement," said William E. Golden, FACP, Chair-elect of ACP's Board of Regents and professor of internal medicine at the University of Arkansas in Little Rock, Ark., who has worked closely with the Arkansas QIO. "The upside of a registry is that it can be set up fairly quickly. The downside is that it's really a short-term fix for practices that likely will be getting an EHR in the future."


A growing number of patient registry sources—both free and fee-based—are now available. (See "Want to start a registry? Public, commercial products can help.") Even physicians who have EHRs are turning to off-the-shelf registry software.

Others are taking a do-it-yourself approach to develop disease-registry systems. Steven Dosh, FACP, an internist with the 19-physician OSF Medical Group in Escanaba, Mich., has helped create two different patient registries by tapping into the capabilities of his group's practice management billing software.

"Most practices use their computer systems almost solely for billing purposes, and not much beyond that," Dr. Dosh said. "But there are other ways to use those systems."

Dr. Dosh's billing software prints out reports based on claims data, identifying patients with diabetes and asthma, the two diseases the group has decided to track this year.

Staff then reviews patients' charts, pulled on a random basis, to determine whether those patients are being treated according to the group's established clinical standards, and then abstracts the data into a quarterly typewritten report. Measures noted for diabetes, for example, include lipid panel documentation, glycohemoglobins, eye and foot exams, urinary proteins, and diabetic education.

While those reports are currently used only for internal quality improvement, the data will become part of a performance-based bonus system the group is developing—and could easily be packaged into reports for commercial pay-for-performance programs.

In the meantime, Dr. Dosh said, using the simple registry is spurring better patient care.

"When I know that my diabetes [patient] charts are going to be reviewed every three months and that I'll get a score compared to the rest of my colleagues in the group," he said, "I want to do better."

And as part of a research project within the Great Lakes Research into Practice Network, Dr. Dosh's group is also using the University of Michigan's ClinfoTracker clinical reminder system to create another type of registry, one that identifies patients due for colon cancer screening and tracks whether that screening has taken place. (More details are on the software's Web site.) Again, the registry starts with the group's billing data.

According to Dr. Dosh, the ClinfoTracker software queries the practice billing system, creating a list of patients who should be screened based on age—a list that can be generated with just a few mouse clicks and is automatically updated throughout the year.

Dr. Dosh's group uses that list to print out a reminder sheet for all patients, whose names appear on the screening registry, whom he'll see in a given day. Right now, staff must manually enter into the registry when a test has been ordered and when it has been completed.

"Updating ClinfoTracker when the screening is completed takes an additional three-to-four mintues per chart, so generating the lists and reminders from these systems is easy," Dr. Dosh said. "Acting on the data is more time-consuming."

A homegrown approach

E. Rodney Hornbake III, FACP, a general internist in Essex, Conn., takes a multifaceted approach to creating a homegrown registry, which he is already using for pay for performance.

"I'm in an area where the primary payer [Anthem BlueCross] is going to give me as much as a 6% update on my fees, based on my 2005 performance," said Dr. Hornbake, a member of ACP's Medical Informatics Subcommittee. "I wanted to figure out how I could adapt my practice to this new environment." According to Dr. Hornbake, the Anthem program plans to pay varying updates—ranging from 2% to 6%—depending on how physicians manage different chronic diseases and how they use information technology.

A solo practitioner, Dr. Hornbake created his registry by also using his practice management software to generate a list of all his patients, along with their demographic information.

He then opens that list in Microsoft Excel, adding headings to the resulting spreadsheets, including diagnoses and different performance targets he's chosen to track.

He then imports that list into the Comorbid Disease Management Database (COMMAND) software program, a patient registry program developed by the Mississippi QIO that is based on Microsoft Access.

"COMMAND allows me to customize the registry to support tracking of any condition I choose," he said. The three populations he's now tracking are patients with diabetes, congestive heart failure and coronary disease. "The limitation is that I have to manually enter the data for each visit that generates key performance-linked data—such as hemoglobin A1c—into one of the registries."

To help him do that, Dr. Hornbake places a red dot sticker outside of each patient's chart whose name appears in a registry. Throughout his day, he uses a voice recognition system to dictate visit notes that go back into each patient's chart.

The charts with a red dot are set aside for day's end, when Dr. Hornbake manually enters the key performance data into the appropriate registry—a process that initially took him 90 seconds per chart, he said, but which he's gotten down to less than a minute each. He generates monthly reports from the registries, which give him an overview of each tracked population and identifies patients who are past due for visits.

The result, he said, is a simple yet nimble patient registry whose investment was limited to his time and imagination.

"It doesn't require a huge change in how you work, and it doesn't require a huge monetary investment in software—but it does take some front-end time." So far, he said, the registry has helped him identify diabetic patients who aren't well controlled and in need of more proactive management.

Bonnie Darves is a freelance writer in Lake Oswego, Ore.


Want to start a registry? Public, commercial products can help

If you're just starting to look at patient registries, experts say you don't need to start from scratch.

"There is little reason to reinvent the wheel," said William E. Golden, FACP, Chair-elect of ACP's Board of Regents and professor of internal medicine at the University of Arkansas in Little Rock, Ark. "A lot of people can give you advice on products and implementation techniques."

Some registry products are geared to users with limited computer skills, while others require either knowledge of database programs, such as Microsoft Access, or assistance from someone with basic computer programming skills.

To start, consider looking to local quality improvement organizations (QIOs) for help. Keep in mind that registry tools developed by state quality improvement organizations may offer limited support to users outside that state.

You can also read reports that describe and compare various offerings. The "Chronic Disease Registries: A Product Review" report from the California Health Care Foundation (CHCF) is an excellent recent overview of registry products and tools, both free and fee-based. The report is online.

A second CHCF report, "Using Computerized Registries in Chronic Disease Care," offers a useful rundown on the function and use of computerized disease registries. It also outlines issues physicians should consider when evaluating registry products and integrating them into their practices.

And the national Doctor's Office Quality-Information Technology initiative, which promotes use of electronic health records and information technology in physician practices, also offers a variety of registry-related information and resources on its Web site.

Public-domain registry tools:

  • COMMAND, or Comorbid Disease Management Database. This free chronic disease patient registry, available through the Mississippi QIO, contains more than 130 disease- and test-tracking items. Physicians can add other items as desired. The COMMAND system also includes 21 reminder rules as well as American Cancer Society screening guidelines.

  • Disease Electronic Management System (DEMS) and Chronic Disease Electronic Management System (CDEMS). Originally developed by the Washington Department of Health for diabetes management, the DEMS product is a primary care-focused registry, tracking and reporting system. The subsequently developed CDEMS registry allows physicians to track multiple chronic conditions, including cardiovascular disease, asthma and depression. An overview of both registries is available.

    The DEMS products have spawned a number of related services, including a helpful user network.

  • Patient Electronic Care System (PECS2). This software program was designed by the Texas Association of Community Health Centers, a primary care organization, to support care to patients with chronic diseases or cancer. It can be downloaded from the Web site, which also offers training for users and instructions for technical support personnel. Registry setup requires knowledge of Microsoft Access. A program overview is online.

  • STEPS Electronic Collection and Analysis Tool. Information about this tool was developed by the Illinois Foundation for Quality Health Care.

  • Patient Care Management. This software program is focused on diabetes and preventive care services, and available through the Wisconsin QIO.

Commercial registry products:

  • AmCare. This product features both disease registry and case management applications, and can import clinical and other data from several other systems.

  • CliniPro. Focused solely on diabetes management, the registry is geared to both physicians and patients. An EHR product is also available.

  • Delphi Diabetes Registry. Developed in collaboration with the American Diabetes Association (ADA), the software can be used to apply for ADA provider recognition and supports the recently established National Standards for Diabetes Self-Management Education program.

  • DocSite. This product, which garnered top marks in the CHCF report, offers a registry and a variety of related applications, such as collaborative decision-making tools and online patient education content. It also features bidirectional data capabilities to give sponsors of pay-for-performance programs a mechanism for communicating with participating physicians. An interactive registry tool, PatientPlanner, offers a range of customization options.

  • Patient Electronic Care System. This commercial product, developed as an enhancement of the public-domain PECS (see above), tracks clinical data for a wide range of chronic conditions, and incorporates sophisticated importing, exporting and reporting functions.


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