Authors' objectives: To (1) conduct a systematic literature review of systems used to standardize language and definitions for outcome measures and other data elements, including systems for registries, clinical trials, electronic health records (EHRs), and quality reporting systems; and (2) use those findings to develop the Outcome Measures Framework (OMF) information model.

Authors' recommendations: Existing initiatives provide a wealth of opportunity for collaboration and shared learning. However, there is no existing effort identified through this review that attempts to achieve the same goals as the OMF, which is intended to support both development of new consensus-driven outcome measures for use in registries as well as provide a repository for existing outcome measures to facilitate reuse. Thus, the OMF would fill a unique need. This report presents three potential approaches for the OMF: a fully-curated model, a communitysourced model, and a hybrid community-curated model. Both the community-sourced and hybrid community-curated model have the advantage of providing robust content to users immediately upon launch and are therefore more likely to attract users. While all have strengths and limitations, the hybrid community-curated model represents the approach that is more likely to be scalable and sustainable, while still encouraging innovation within the research community. Regardless of the approach used for the OMF, the system must prioritize ease of use and search capabilities to appeal to its voluntary user base, and should incorporate pilot testing to ensure that the system meets user needs. The OMF should also promote the use of data standards by establishing a data architecture and encouraging common data definitions. Additionally, it should provide links to other sources of standards or common data elements as part of a broader effort to generate common understanding of information used within the broad registry community. Lastly, the OMF, which must demonstrate value in order for the system to become widely used, would benefit from the development of case studies to support its value proposition.

Project Status: Completed

Year Published: 2016

URL for published report: https://www.effectivehealthcare.ahrq.gov/ehc/products/311/2310/registry-of-patient-registries-OMF-report-160912.pdf

English language abstract: An English language summary is available

Publication Type: Not Assigned

Country: United States

Organisation Name: Agency for Healthcare Research and Quality

Contact Address: Center for Outcomes and Evidence Technology Assessment Program, 540 Gaither Road, Rockville, MD 20850, USA. Tel: +1 301 427 1610; Fax: +1 301 427 1639;

Contact Name: martin.erlichman@ahrq.hhs.gov

Contact Email: martin.erlichman@ahrq.hhs.gov

Copyright: Agency for Healthcare Research and Quality (AHRQ)