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Outcome Measure Harmonization and Data Infrastructure for Patient-Centered Outcomes Research in Depression: Final Report

Research White Paper

Investigators: , M.P.H., , Ph.D., , M.D., M.S.P.H., , Ph.D., , M.D., , M.D., PhD., and , M.D.

Author Information and Affiliations
Rockville (MD): Agency for Healthcare Research and Quality (US); .
Report No.: 21(22)-EHC032

Structured Abstract

Objective:

The objective of this project was to demonstrate the feasibility and value of collecting harmonized depression outcome measures in the patient registry and health system settings, displaying the outcome measures to clinicians to support individual patient care and population health management, and using the resulting measures data to support patient-centered outcomes research (PCOR).

Methods:

The harmonized depression outcome measures selected for this project were response, remission, recurrence, suicide ideation and behavior, adverse effects of treatment, and death from suicide. The measures were calculated in the PRIME Registry, sponsored by the American Board of Family Medicine, and PsychPRO, sponsored by the American Psychiatric Association, and displayed on the registry dashboards for the participating pilot sites. At the conclusion of the data collection period (March 2020-March 2021), registry data were analyzed to describe implementation of measurement-based care and outcomes in the primary care and behavioral health care settings. To calculate and display the measures in the health system setting, a Substitutable Medical Apps, Reusable Technology (SMART) on Fast Healthcare Interoperability Resource (FHIR) application was developed and deployed at Baystate Health. Finally a stakeholder panel was convened to develop a prioritized research agenda for PCOR in depression and to provide feedback on the development of a data use and governance toolkit.

Results:

Calculation of the harmonized outcome measures within the PRIME Registry and PsychPRO was feasible, but technical and operational barriers needed to be overcome to ensure that relevant data were available and that the measures were meaningful to clinicians. Analysis of the registry data demonstrated that the harmonized outcome measures can be used to support PCOR across care settings and data sources. In the health system setting, this project demonstrated that it is technically and operationally feasible to use an open-source app to calculate and display the outcome measures in the clinician’s workflow. Finally, this project produced tools and resources to support future implementations of harmonized measures and use of the resulting data for research, including a prioritized research agenda and data use and governance toolkit.

Conclusion:

Standardization of outcome measures across patient registries and routine clinical care is an important step toward creating robust, national-level data infrastructure that could serve as the foundation for learning health systems, quality improvement initiatives, and research. This project demonstrated that it is feasible to calculate the harmonized outcome measures for depression in two patient registries and a health system setting, display the results to clinicians to support individual patient management and population health, and use the outcome measures data to support research. This project also assessed the value and burden of capturing the measures in different care settings and created standards-based tools and other resources to support future implementations of harmonized outcome measures in depression and other clinical areas. The findings and lessons learned from this project should serve as a roadmap to guide future implementations of harmonized outcome measures in depression and other clinical areas.

Contents

Prepared for: Agency for Healthcare Research and Quality, U.S. Department of Health and Human Services, 5600 Fishers Lane, Rockville, MD 20857; www.ahrq.gov Contract No. 75Q80119C00005 Prepared by: This report is based on research conducted by OM1, Inc. with subcontractors the American Board of Family Medicine and American Psychiatric Association under contract to the Agency for Healthcare Research and Quality (AHRQ), Rockville, MD (Contract No. 75Q80119C00005). This work is supported by the Office of the Secretary Patient-Centered Outcomes Research Trust Fund under Interagency Agreement 18-596R-18.

Suggested citation:

Leavy MB, Boussios C, Phillips RL, Clarke D, Sarvet B, Boxwala A, Gliklich R. Outcome Measure Harmonization and Data Infrastructure for Patient-Centered Outcomes Research in Depression: Final Report. (Prepared by OM1, Inc. and its subcontractors the American Board of Family Medicine, American Psychiatric Association, Baystate Health, and Elimu Informatics under Contract No. 75Q80119C00005.) AHRQ Publication No. 21(22)-EHC032. Rockville, MD: Agency for Healthcare Research and Quality; June 2022. DOI: 10.23970/AHRQEPCWHITEPAPERDEPRESSIONFINAL. Posted final reports are located on the Effective Health Care Program search page.

This report is based on research conducted by OM1, Inc. with subcontractors the American Board of Family Medicine, American Psychiatric Association, Baystate Health, and Elimu Informatics under contract to the Agency for Healthcare Research and Quality (AHRQ), Rockville, MD (Contract No. 75Q80119C00005). This work is supported by the Office of the Secretary Patient-Centered Outcomes Research Trust Fund under Interagency Agreement 18-596R-18. The findings and conclusions in this document are those of the authors, who are responsible for its contents; the findings and conclusions do not necessarily represent the views of AHRQ. Therefore, no statement in this report should be construed as an official position of AHRQ or of the United States (U.S.) Department of Health and Human Services.

None of the investigators have any affiliations or financial involvement that conflicts with the material presented in this report.

The information in this report is intended to help healthcare decision makers—patients and clinicians, health system leaders, and policymakers, among others—make well-informed decisions and thereby improve the quality of healthcare services. This report is not intended to be a substitute for the application of clinical judgment. Anyone who makes decisions concerning the provision of clinical care should consider this report in the same way as any medical reference and in conjunction with all other pertinent information, i.e., in the context of available resources and circumstances presented by individual patients.

This report is made available to the public under the terms of a licensing agreement between the author and AHRQ. This report may be used and reprinted without permission except those copyrighted materials that are clearly noted in the report. Further reproduction of those copyrighted materials is prohibited without the express permission of copyright holders.

AHRQ appreciates appropriate acknowledgment and citation of its work. Suggested language for acknowledgment: This work was based on a Final Report, Outcome Measure Harmonization and Data Infrastructure for Patient-Centered Outcomes Research in Depression, by OM1, Inc., with subcontractors the American Board of Family Medicine, American Psychiatric Association, Baystate Health, and Elimu Informatics through the Agency for Healthcare Research and Quality (AHRQ).

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