Patient registries—databases of clinical information critical to evaluating care processes and outcomes—can play a critical role in measuring quality and cost of health care, yet they are often limited by shortcomings in design and function. Using registries to advance performance measurement and ultimately improve care will involve finding solutions to what are currently common registry limitations.
This white paper from the Robert Wood Johnson Foundation-supported High-Value Health Care Project describes solutions for leveraging both administrative and registry data to make additional performance results available, as well as further increase registry use for performance measurement and other purposes.
From the executive summary
The Institute of Medicine (IOM) has recommended creating a “Learning Health Care System” that would include the capacity for learning more quickly and effectively from the delivery of health care. An infrastructure capable of supporting rapid learning could meet critical needs for better evidence in, at a minimum, three areas: measuring the quality and cost of health care; comparative clinical effectiveness research; and medical product safety surveillance.
Patient registries—databases of clinical information critical to evaluating care processes and outcomes—can play a vital role in measuring quality and cost. However, as the role of registries is often limited by significant shortcomings in their current design and function, they must be adapted and expanded to meet changing needs.
Several challenges exist in leveraging registries to achieve better performance measurement. The time and expense of linking administrative and clinical data have been questioned because most currently endorsed measures that would use a new, hybrid database require elements from only one of the datasets. There is still a significant lack of measures that require both clinical and administrative data elements.
Several physician groups, integrated delivery systems, and health information exchanges have reported adopting or creating their own internal registries. National (external) registries may have limited use if they cannot interface with administrative or medication data in the same way internal registries can. Furthermore, while external registries contain information that can lead to improved quality of care, they must be linked to claims data to achieve the breadth of information that internal registries can provide. Allowing this linkage can raise legal concerns related to patient privacy.
Additionally, using registries to advance performance measurement and ultimately improve care will involve finding solutions to what are currently common registry limitations. These include:
- Standardizing data elements and definitions across registries that address the same disease or treatment areas;
- Developing a uniform method of patient identity management;
- Helping registries actively interoperate with electronic health records systems;
- Standardizing methodologies for sampling, data quality assurance, and risk adjustment;
- Standardizing linkage methods;
- Ensuring high provider participation across these programs; and
- Guaranteeing that providers and data users are confident registries are sustainable.
This paper describes short-term solutions for leveraging both administrative and registry data to make additional performance results available, as well as longer-term solutions to further increase the utility of registries for performance measurement and other purposes. While these recommendations are based on experience with cardiovascular disease registries, they can be applied to other clinical areas and are also broadly relevant across the health care system.
- 1. Aligning Forces for Quality: At the Forefront of Reform
- 2. Aligning Forces for Quality Report
- 3. How Registries Can Help Performance Measurement Improve Care
- 4. The ABCs of Measurement
- 5. Provisions Related to Quality in the New Health Reform Law
- 6. The State of Health Care Quality 2009
- 7. An Overview of Final Regulations Implementing HITECH's Meaningful Use Provisions and Their Implications for Regional Collaboratives
- 8. Making Reform a Reality
- 9. Quality & Equality in U.S. Health Care
- 10. How to Display Comparative Information that People Can Understand and Use
- 11. How to Describe the Health and Community Context for Comparative Performance Reports
- 12. Sample Site for Reporting Health Care Quality Data
- 13. Consumer Decision Points in Accessing Comparative Health Care Information
- 14. Improving Care Coordination by Streamlining Patient Referrals
- 15. Modifying the Admission Process to Improve the Collection and Accuracy of REL Data Collection
- 16. Modifying the Registration System to Accurately and Efficiently Capture Patient Language Preference
- 17. Ensuring REL Data Collection with the Use of a Post-Discharge Survey Tool
- 18. Ensuring Interpreter Qualifications and Standards Through Vendor Contracts
- 19. Educating and Motivating the Community to Reduce Disparities
While the need to address disparities in care is well known, few strategies for reducing disparities have been studied systematically.
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