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Patient Registries

Updated: 3.9.2010

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From the ACP Diabetes Portal

Learn what a registry is, why to use one to improve chronic care, how a registry works, how to select one, and how to implement it successfully.

The source material for this tutorial is the 'Using Computerized Registries in Chronic Disease Care' report, which has been adapted with permission from the California Healthcare Foundation.

From the ACP Diabetes Portal

The source material for this tutorial is the 'Chronic Disease Registries: A Product Review' report, which has been adapted with permission from the California Healthcare Foundation.

From the ACP Diabetes Portal

See a patient registry system in use. Learn some of the basic principles of registries and how they can assist you in improving the care of patients with chronic diseases like diabetes.

As part of the Tax Relief and Healthcare Act of 2007, Congress mandated the creation of a new Medicare program called the Physician Quality Reporting Initiative (PQRI). The program will start on July 1 and pay physicians a 1.5% bonus for successfully reporting on quality measures through the claims process for services furnished through Dec. 31.

In most cases, a physician must report on at least three of the 74 PQRI quality measures for at least 80% of the eligible patient encounters to receive the bonus payment.

ACP Observer will be covering this program in both this column and next month's column and the College will make PQRI information available through other forums.

Last month, this column reviewed many of the elements of the Medicare Physician Quality Reporting Initiative (PQRI). This month's column takes a closer look at the measure specifications that will explain exactly how to participate.

The Physicians Quality Reporting Initiative (PQRI), starting July 1, marks the official arrival of Medicare pay-for-reporting. The program enables physicians to receive a bonus payment for successfully reporting on quality measures for services furnished to beneficiaries over the course of the six-month period ending Dec. 31.

The legislation that established the PQRI provides an expectation that the program will continue in some form in 2008, although the law fails to specifically fund a 2008 program. While there is uncertainty surrounding whether Congress will continue to fund the program in 2008, ACP encourages internists to participate now because it will prepare practices for future reporting.

College resources should ease your participation--enabling you to collect a 2007 bonus and make the investment that will prepare you for future reporting.

The May 2007 AHRQ release of the Effective Health Care Research Report on Registries for Evaluating Patient Outcomes is a recently released, free guide from the Agency for Healthcare Research and Quality (AHRQ).


Summary from the AHRQ:


Patient registries are organized systems that collect data for scientific, clinical, or policy purposes. Registries are a valuable complement to randomized controlled trials in determining real-world outcomes in the practice of medicine. They do not generally have restrictive inclusion or exclusion criteria, nor do they specify what therapy the health care provider must adhere to. They can be used to evaluate outcomes for diverse purposes ranging from the natural history of a disease, to the safety of drugs or devices, to the real-world effectiveness of therapies.


The Effective Health Care Program of the Agency for Healthcare Research and Quality (AHRQ) conducts and supports research focused on the outcomes, effectiveness, comparative clinical effectiveness, and appropriateness of pharmaceuticals, devices, and health care services. As part of the Effective Health Care Program, Outcome Sciences, Inc., a DEcIDE (Developing Evidence to Inform Decisions about Effectiveness) center, and the Duke EPC (Evidence-based Practice Center) collaborated in a study of registries and the many elements involved in creating a registry.


Outcome Sciences, with the assistance of the Duke EPC, coordinated a group of 39 contributors and 35 reviewers to develop a handbook to serve as a guide to the design, implementation, analysis, interpretation, and evaluation of the quality of a registry for understanding patient outcomes.


This is a summary of the full handbook. The "Overview" presents basic information on the main areas to consider in setting up a registry, from selection of data elements and protection of patient privacy to analyzing results and publishing findings. "Evaluating Registries" outlines elements of quality to be considered in setting up or evaluating a registry. Basic good registry practices are given, as well as future directions for practices that could enhance scientific rigor but may not be practical for every registry.

CMS has announced the 32 registries that have been "qualified" by CMS to submit quality data on behalf of their participants for the 2008 Physician Quality Reporting Initiative (PQRI) registry submission option. Each of the listed registries has gone through a thorough vetting process including investigating their capabilities, reviewing a sample measure flow (this checks to see whether the registry calculates the measure's reporting and performance rates correctly), and transmitting the required information in the requested file format (XML). Eligible professionals interested in registry-based participation for PQRI in 2008 are encouraged to contact the registries directly to determine which registry meets their practice's needs and collects quality information on measures that are important to the practice.