STATUS: Active Project
The AHRQ Registry of Patient Registries contains almost 4,000 registries for research, quality improvement, public reporting, and post market surveillance as of April 2018. These registries have considerable potential to be used for PCOR. However, because these data do not share standardized definitions of outcomes measures, analysis of data derived across registries is impossible. AHRQ has an existing OS-PCORTF funded project to harmonize measures in five clinical areas titled Harmonization of Clinical Data Element Definitions for Outcome Measures in Registries, in which stakeholders identified three major barriers to the implementation of measures: 1) burden on clinical sites to collect data; 2) disruption to clinical care and challenges in extracting data from the clinical records; and 3) challenges with working with electronic health records (EHRs). While stakeholders recognize the importance of harmonized outcomes measures, these barriers contribute to reluctance to implement.
The main goal of this project is to address these barriers, using the depression topic as an example. Researchers will collect complex outcome measure information on depression from clinical sites and will transfer that data to existing patient registries. This project will utilize many patient reported outcome (PRO) and structured data collection tools developed the OS-PCORTF funded project Advancing the Collection and Use of Patient-Reported Outcomes through Health Information Technology. These tools include a mobile and web-based platform with reminders for patients to fill out forms at specific time intervals and automatic generation of outcome measures that are presented back to physicians through integration with EHRs. While these tools can address the barriers, they have not yet been broadly implemented.
Researchers will implement outcome measures for depression into a variety of settings by linking clinical data to two different registries and testing the exchange of data back from the registries to participating clinical sites. The project will collect outcome measures through three different methods: 1) by extracting data already available in the EHR; 2) from those calculated from items in the nine item Patient Health Questionnaire (PHQ-9); and 3) using new data collection from structured data capture or through natural language processing of clinical notes,
This project will work with clinical sites of an integrated health system and two distinct registries (a primary care focused registry and a specialty care registry) to address and overcome challenges while developing registry enhancements. Knowledge gained from this project will address barriers with accessible tools so that other registries can enable collection and use of data that is cost effective for sites and will reasonably fit into their clinical workflow.
PROJECT PURPOSE & GOALS
The overall goal of the project is to examine whether this approach to data collection enhances the use of registries of research on patient outcomes by completion of the following outcomes:
Tools for clinicians and patients to facilitate integration of the harmonized depression outcome measures into EHRs and registries so that these data will be available for clinical research, PCOR, quality improvement and implementation research.
Proof of concept for a standards-based approach for collecting and reporting patient outcomes information to clinicians within their workflow and simultaneously transmitting the data to registries to make it available for research.
Tools, such as instructions and pieces of code, to make it easier for researchers and registry developers to integrate registries with clinical systems.