Patient Registries

Updated: 7.21.2008

Patient Registries Tutorial - Overview

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.



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Patient Registry Tutorial - Product Selector

From the ACP Diabetes Care Guide

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.



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Patient Registries Tutorial - Simulation, Case Study

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.



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ACP Observer - May 2007 - Qualify for quality: CMS offers 1.5% reporting bonus

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.



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ACP Observer - June 2007 - More details on Medicare's PQRI

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.



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ACP Observer - June 2007 - Medicare's new bonus program offers chance to profit today, prepare for tomorrow

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.



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American Association of Diabetes Educators AADE7 IMPACT

While not formally a patient registry system, the web-based AADEtm IMPACT product, developed together with the University of Pittsburgh Diabetes Institute, provides AADE members with a system that offers:

  • Printable goal sheets, allowing clinicians to easily track and monitor behavior change and clinical indicators electronically
  • Letter-writing templates, helping to foster communications between patients and members of the clinical team
  • Report generation, providing easy-to-read summaries of individual patient and site summary information
  • A document center, containing valuable references and resources



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AHRQ Registries Research Report

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.



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Report on the Value of Information Technology-Enabled Diabetes Management (ITDM)

A report entitled "The Value of Information Technology-Enabled Diabetes Management (ITDM)" by the Center for Information Technology Leadership (CITL) concludes that information technology data management can improve care processes, delay type-2 diabetes complications and save healthcare dollars. According to the study, electronic diabetes registries used by providers, followed by clinician decision support systems for providers, showed the greatest improvement in clinical outcomes. Of the existing technologies, diabetes registries saved $14.5 billion in expenditures during a 10-year period.

The CITL report also states that while other technologies had varying degrees of savings, national adoption of them would cost more than it saves. The report went further in saying that Medicare and other payers will benefit the most from ITDM because they bear the greatest financial risk. CITL's research approach was to develop computer-based models that simulate type-2 diabetes patient outcomes in a diabetes management program over 10 years. CITL is a nonprofit research center based at Partners HealthCare System in Boston. The research for the report was funded through a Robert Wood Johnson Foundation grant, which was supported by the Healthcare Information and Management Systems Society (HIMSS).

NOTE: This description was excerpted from an e-newsletter of Health Management Technology, August 2007.



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