AHRQ Views

Blog posts from AHRQ leaders

MAR

2018

Bringing the Patient Voice to Evidence Generation: Patient Engagement in Disease Registries

By Arlene Bierman, M.D., M.S.

We are only just beginning to harness the power of “real world data” to provide the evidence needed to improve health care quality, safety, and outcomes. One of the major goals of AHRQ 2.0 is catalyzing the learning healthcare system, where internal data together with external evidence is used to inform improvements in clinical practice.

Health providers are collecting massive amounts of data in electronic health records, patient registries, and from other data sources for multiple purposes, including quality reporting, value-based purchasing, outcome-based contracting, accreditation, and patient safety. While these real-world data can help us learn what works best, for which people, under which circumstances, what is often missing from these data is the patient voice that is needed to inform decisionmaking by patients and clinicians to assure that care is aligned with patients’ goals, values, and preferences.

With an explosion of new treatments, diagnostic tests, medical devices, and new approaches to care delivery, evidence gaps about their effectiveness are growing exponentially. There is great potential for new approaches to data collection and use to close these gaps, to support a continuous learning cycle of evidence implementation and generation. Disease registries currently comprise an important component of this knowledge ecosystem and are widely used for quality improvement and research. AHRQ works closely with the registry community and provides important resources to support registry development and use:

The AHRQ Registries for Evaluating Patient Outcomes: A User’s Guide is a reference for planning, developing, maintaining, and evaluating registries developed to collect data about patient outcomes, and has been invaluable to health systems in collecting more reliable and valid data.
The AHRQ Registry of Patient Registries provides a database of collection efforts so that there can be collaboration instead of redundancy.
The AHRQ Outcome Measures Framework is designed to harmonize data definitions. Currently data is collected using different definitions in different places (or sometimes in two different data collection systems in the same place!), which often leads to an inability to analyze and compare data across settings.

We are pleased to announce that we are adding a new online resource that recognizes the critical role of the patient perspective and patient-reported outcomes: the 21st Century Patient Registries report. This report is an e-book addendum to AHRQ's Registries for Evaluating Patient Outcomes: A User’s Guide. Its chapters focus on engaging with patients throughout the design and conduct of registries; methodological considerations for using digital health technologies in registries; designing direct-to-patient and other patient-centric studies; and building registry networks that allow greater use and sharing of information.

The report provides a number of case studies, while offering best practices for implementing more patient-centered research activities when designing and conducting registries. It also offers guidance on combining evidence from numerous registries to better understand potential safety concerns across regions.

FORCE-TJR is an example of how registries can improve quality and support the increased uptake of evidence in practice, while also supporting evidence generation through research that would not be possible without these registry data. AHRQ’s 4-year, $12 million national research project established the most comprehensive U.S. database on total hip and knee joint replacement patients and their surgical outcomes. The registry enables evidence implementation and generation in the learning healthcare system, including evaluation of new orthopedic devices, understanding important patient safety issues such as post-surgical infections, and helping to understand pain after surgery and medication use, a critical element in light of the opioid crisis.

The FORCE registry is also helping providers in multiple ways, including as a Qualified Clinical Data Registry, to meet Centers for Medicare & Medicaid Services quality reporting requirements under the Merit Based Incentive Payment System, and by helping providers understand the risks in their patient pool, which is important to negotiate value-based and bundled payment arrangements.

But most importantly, the FORCE registry provides real-time scoring of patient-reported outcomes on symptoms and function. These data can guide treatments and discussions between patients and clinicians in order to optimize functional status and well-being after hip and knee replacement surgery.

AHRQ is also catalyzing the use of patient-reported outcomes through a pair of grant announcements, one for utilizing health information technology (IT) to scale and spread successful practice models using patient-reported outcomes, another for implementation and evaluation of new health IT strategies for collecting and using patient-reported outcome measures.

This fall, the agency will conduct a challenge competition to develop user-friendly technical tools to collect and integrate patient-reported outcome data in electronic health records or other health IT products. We'll send out more information about this in a few months.

AHRQ remains at the forefront of supporting the use of registries and the rich sources of data and information they represent, and especially for ensuring that the patient voice is present. With the release of the latest addendum to our registry user's guide, together with the Agency’s other initiatives, we hope to further the revolution of producing and using real-world evidence to make the best possible healthcare decisions.

Dr. Bierman is Director of AHRQ's Center for Evidence and Practice Improvement

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Page last reviewed March 2018
Page originally created March 2018

Internet Citation: Bringing the Patient Voice to Evidence Generation: Patient Engagement in Disease Registries. Content last reviewed March 2018. Agency for Healthcare Research and Quality, Rockville, MD. http://www.ahrq.gov/news/blog/ahrqviews/disease-registries.html