Harmonization of Clinical Data Element Definitions for Outcome Measures in Registries

Convening working groups to determine common clinical outcome definitions and enhancing common definitions across data collection and reporting systems.
Agency
  • Agency for Healthcare Research and Quality (AHRQ) 

 

Start Date
  • 4/29/2016

 

Functionality
  • Linking of Clinical and Other Data for Research
  • Standardized Collection of Standardized Clinical Data

 

STATUS: Active Project

BACKGROUND

Electronic health records (EHRs) and registries contain a variety of rich clinical information including demographics, diagnoses, medications, allergies, and laboratory values. These data have the potential to support hypothesis generation and large scale clinical research studies. However, it is essential to address the variability in clinical definitions in order to meaningfully interpret results of studies and use the results to improve patient outcomes.

To address this need, Agency for Healthcare Research and Quality (AHRQ) is developing an Outcomes Measures Framework – a conceptual model for developing standard outcome measures – to design and pilot test a tool for collecting and reporting about outcome measures in a system such as the AHRQ Registry of Patient Registries. This PCORTF project supports the creation of outcome measures for the Outcome Measures Framework.

PROJECT PURPOSE & GOALS

This project will convene a series of clinical topic‑specific working groups to discuss the various clinical outcome definitions currently in use and how these definitions can be harmonized to promote common definitions across data collection and reporting systems. The working groups will solicit input from a broad stakeholder community, including registry holders, EHR developers, policymakers developing quality measures, and clinicians, among others. 

The project objectives are to:

  • Develop a consensus set of clinical data element definitions, for outcome measures for each of five wide-ranging clinical topic areas, to be used in registries.

  • Develop best practices for governance of data element definition libraries.

  • Develop best practices for harmonization of outcome measures between different registries, EHRs, and reporting requirements.