Building the Data Capacity for Patient-Centered Outcomes Research: The 2018 Annual Report Office of Health Policy Assistant Secretary for Planning and Evaluation U.S. Department of Health and Human Services 2018 PORTFOLIO REPORT | 1 Suggested citation: Dullabh P, Dhopeshwarkar R, Heaney-Huls K, Hovey, L, Rajendran N, Moriarty E, Steiner C. Building the Data Capacity for Patient-Centered Outcomes Research: The 2018 Annual Report. Prepared under Contract No. HHSP233201600020I. The task order number for the current Cost Plus Fixed Fee umbrella contract is: HHSP23337001T between the Department of Health and Human Services’ Office of the Assistant Secretary for Planning and Evaluation Office of Health Policy and NORC at the University of Chicago. 2018 PORTFOLIO REPORT | II Table of Contents Executive Summary .................................................................................................................... 1 I. Introduction .......................................................................................................................... 2 II. Background and Context .................................................................................................... 3 Active OS-PCORTF Funded Projects .......................................................................................... 3 Methods ....................................................................................................................................... 7 III. 2018 Major Accomplishments ............................................................................................ 7 Enhancing Patient Engagement through the Emerging Use of APIs ........................................... 7 Data Governance ......................................................................................................................... 8 Enhancing Distributed Research Networks .................................................................................. 9 Data Standardization ................................................................................................................. 10 Linking Data ............................................................................................................................... 11 IV. Agency for Healthcare Research and Quality (AHRQ) ................................................... 13 Harmonization of Clinical Data Element Definitions for Outcome Measures in Registries ......... 13 Project Purpose and Goals: ..................................................................................................... 14 Contributions to the PCOR Data Infrastructure Functionalities: .............................................. 14 Accomplishments and Deliverables: ....................................................................................... 15 Coordination with Other Federal Agencies: ............................................................................. 16 Capstone for Outcomes Measures Harmonization Project ........................................................ 16 Project Purpose and Goals: ..................................................................................................... 17 Contributions to the PCOR Data Infrastructure Functionalities: .............................................. 17 Accomplishments and Deliverables: ....................................................................................... 17 Coordination with other Federal Agencies: ............................................................................. 17 V. Centers for Disease Control and Prevention (CDC) ....................................................... 18 Childhood Obesity Data Initiative (CODI): Integrated Data for Patient-Centered Outcomes Research Project ....................................................................................................................... 18 Project Purpose and Goals: ..................................................................................................... 19 Contributions to PCOR Data Infrastructure Functionalities: .................................................... 19 Accomplishments and Deliverables: ....................................................................................... 20 Enhancing Identification of Opioid-Involved Health Outcomes Using Linked Hospital Care and Mortality Data ...................................................................................................................... 20 Project Purpose and Goals: ..................................................................................................... 21 Contributions to PCOR Data Infrastructure Functionalities: .................................................... 21 Accomplishments and Deliverables: ....................................................................................... 21 Coordination with other Federal Agencies: ............................................................................. 22 2018 PORTFOLIO REPORT | III Improving the Mortality Data Infrastructure for Patient-Centered Outcomes Research ............. 22 Project Purpose and Goals: ..................................................................................................... 22 Contributions to PCOR Data Infrastructure Functionalities: .................................................... 23 Accomplishments and Deliverables: ....................................................................................... 23 Strengthening the Data Infrastructure for Outcomes Research on Mortality Associated with Opioid Poisonings ...................................................................................................................... 24 Project Purpose and Goals ...................................................................................................... 25 Contributions to PCOR Data Infrastructure Functionalities: .................................................... 25 Accomplishments and Deliverables: ....................................................................................... 26 VI. Centers for Medicare and Medicaid Services (CMS) ...................................................... 27 Improving Beneficiary Access to Their Health Information through an Enhanced Blue Button Service ........................................................................................................................... 27 Project Purpose and Goals: ..................................................................................................... 27 Contributions to PCOR Data Infrastructure Functionalities ..................................................... 28 Accomplishments and Deliverables ........................................................................................ 28 VII. Food and Drug Administration (FDA) .............................................................................. 29 Collection of Patient-Provided Information through a Mobile Device Application for Use in Comparative Effectiveness and Drug Safety Research ............................................................. 29 Project Purpose and Goals: ..................................................................................................... 30 Contributions to PCOR Data Infrastructure Functionalities: .................................................... 30 Accomplishments and Deliverables: ....................................................................................... 31 Cross-Network Directory Service ............................................................................................... 32 Project Purpose and Goals: ..................................................................................................... 32 Contributions to the PCOR Data Infrastructure Functionalities: .............................................. 33 Accomplishments and Deliverables: ....................................................................................... 33 Source Data Capture from Electronic Health Records: Using Standardized Clinical Research Data ........................................................................................................................... 34 Project Purpose and Goals: ..................................................................................................... 35 Contributions to PCOR Data Infrastructure Functionalities: .................................................... 35 Accomplishments and Deliverables: ....................................................................................... 36 Coordination with Other Federal Agencies: ............................................................................. 36 Standardization and Querying of Data Quality Metrics and Characteristics for Electronic Health Data ................................................................................................................................ 37 Project Purpose and Goals: ..................................................................................................... 37 Contributions to PCOR Data Infrastructure Functionalities ..................................................... 37 Accomplishments and Deliverables: ....................................................................................... 37 Coordination with other Federal Agencies: ............................................................................. 38 2018 PORTFOLIO REPORT | IV Utilizing Data from Various Data Partners in a Distributed Manner ........................................... 38 Project