In December 2012, the Agency for Healthcare Research and Quality (AHRQ) launched the Registry of Patient Registries (RoPR), which is a database of existing patient registries that was designed with extensive stakeholder participation to promote collaboration, reduce redundancy, and improve transparency in registry-based research. In partnership with AHRQ, L&M Policy Research, and Truven Health Analytics, AcademyHealth facilitates implementation of RoPR and its related projects, with a particular focus on developing a virtual Community of Practice (CoP) to facilitate discussion of relevant issues related to registry design and use of registry data among diverse stakeholders.
Sponsor/Funder/Partner
Training & Resources
- 2014 Registries for Evaluating Patient Outcomes: A User's Guide: 3rd Edition
This User’s Guide is intended to support the design, implementation, analysis, interpretation, and quality evaluation of registries created to increase understanding of patient outcomes. Although registries can serve many purposes, this guide focuses on registries created for one or more of the following purposes: to describe the natural history of disease, to determine clinical effectiveness or cost-effectiveness of health care products and services, to measure or monitor safety and harm, and/or to measure quality of care.
- 2014 Outcome Measure Framework (OMF) Design Document
Because standardized outcome measures do not exist for most condition areas, clinical studies often use different outcome measures or different definitions for the same outcome measures. The use of different definitions can have a substantial impact on study findings and introduce challenges when comparing or aggregating data across studies, leading to uncertainty when interpreting study findings in the context of existing evidence. The Outcome Measures Framework (OMF) provides a model and tool for the collection and display of information on outcome measures currently being used in patient registries, supports searching for and comparing identified outcome measures, and minimizes user burden. Further, as a content model, the OMF can serve as a standard approach to developing outcome measurement systems in multiple disease areas. The OMF tool is intended to collect and display information on outcome measures used in patient registries, with the goals of characterizing what registries currently collect and supporting long-term efforts to standardize outcome measures.
Pilots & Programs
Web-Based Collaborative Registries Forum
AcademyHealth is leading the development of an online Community of Practice for RoPR, the primary objective of which is to facilitate discussion of relevant issues related to registry design and use of registry data, among individual or groups that are currently involved with registries, as well as those whom may be interested in creating or using registries. The Web-forum also offers a repository of resources that are relevant for a range of registry producers and end-users.
Harmonization of Outcomes Using the Outcome Measures Framework
The RoPR project is also seeking to harmonize clinical definitions and outcome measures used in patient registries across five clinical areas, using the RoPR Outcome Measures Framework (OMF). The OMF is a conceptual model for classifying existing outcome measures that are relevant to patients and providers across most clinical conditions. Harmonizing these outcome measures is the key to improving the ability of registries to connect to other health IT systems. Through extensive stakeholder engagement, the harmonization will be conducted within select five clinical areas, and for each we will, 1) compare outcome measures to identify areas of harmonization; 2) work toward harmonization at series of in-person and web meetings; 3) produce common library of outcome measures for public comment; and 4) finalize library with feedback and post for public use.