BOSTON, March 19, 2018 — The U.S. Agency for Healthcare Research and Quality (AHRQ) today announced the release of a series of publications on the evolving role of patient registries, including increasing the patient focus.
Under contract to AHRQ and L&M Policy Research, OM1, a leading health outcomes and registries company focused on the measurement, comparison, and prediction of treatment outcomes, collaborated on the development of the publications, which are supplements to the third edition of the AHRQ handbook “Registries for Evaluation Patient Outcomes: A User’s Guide” and a pre-cursor to the fourth edition to be released in 2019.
Among the publications released today, is the e-book “21st Century Patient Registries,” which explores how patient registries may incorporate the concepts of patient-centered research, including anticipated benefits, current challenges, best practices and new frontiers.
In addition to the e-book, AHRQ also released the following white papers, which OM1 worked on under contract to AHRQ and L&M Policy Research:
- Managing Missing Data in Patient Registries
- Multi-National Registries: Challenges and Opportunities
“Registries continue to be a critical part of the real-world evidence equation, but over time they have become too trialized, too burdensome and too separated from real clinical practice. The way registries are conducted need to evolve to be more patient-centric and dynamic,” said Richard Gliklich, founder and CEO, OM1. “These papers are a pivotal step in helping researchers understand and start to address some of these issues.”
These publications are the first in a series of those to be published by AHRQ over the next two years that are aimed at providing assistance to researchers and stakeholders involved in the design and implementation of registries. Future publications include an e-book on Registry Informatics due for publication in 2018 and the fourth edition of the registry handbook currently in development.