Building the Data Capacity for Patient-Centered Outcomes Research: The 2020 Annual Report Office of Health Policy Assistant Secretary for Planning and Evaluation U.S. Department of Health and Human Services April 2021 Building the Data Capacity for Patient-Centered Outcomes Research: The 2020 Annual Report Suggested citation: Dullabh P, Dhopeshwarkar R, Heaney-Huls K, Hovey L, Desai P, Lama S, Leaphart D, Habte B. Building the Data Capacity for Patient-Centered Outcomes Research: The 2020 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. Building the Data Capacity for Patient-Centered Outcomes Research: The 2020 Annual Report Table of Contents I. Introduction ....................................................................................................................... 1 II. OS-PCORTF Portfolio Overview ....................................................................................... 2 III. Portfolio Contributions to Key HHS Priorities ................................................................ 2 Data Infrastructure for PCOR on Women’s Health and Improving Maternal Health Outcomes .... 3 PCOR Data Infrastructure in Support of the COVID-19 Response ............................................... 4 Improvements in PCOR Data Infrastructure to Address Stakeholder Priorities ............................ 9 IV. 2020 Major Accomplishments .........................................................................................12 VI. Agency for Healthcare Research and Quality (AHRQ) ..................................................16 Capstone for Outcomes Measures Harmonization Project .......................................................... 16 Enhancing Patient-Centered Outcomes Research (PCOR): Creating a National Small-Area Social Determinants of Health (SDOH) Data Platform................................................................. 19 VII. Centers for Disease Control and Prevention (CDC) ......................................................21 Augmenting the National Hospital Care Survey (NHCS) Data through Linkages with Administrative Records................................................................................................................. 22 Childhood Obesity Data Initiative (CODI): Integrated Data for Patient-Centered Outcomes Research ...................................................................................................................................... 24 Data Linkage: Evaluating Preserving Privacy Methodology and Augmenting the National Hospital Care Survey with Medicaid Administrative Records ...................................................... 27 Developing a Multi-State Network of Linked Pregnancy Risk Assessment Monitoring System (PRAMS) and Clinical Outcomes Data for Patient-Centered Outcomes Research .................... 29 Enhancing Identification of Opioid-Involved Health Outcomes Using Linked Hospital Care and Mortality Data ........................................................................................................................ 31 Identifying Co-Occurring Disorders among Opioid Users Using Linked Hospital Care and Mortality Data................................................................................................................................ 34 Making Electronic Health Record (EHR) Data More Available for Research and Public Health ........................................................................................................................................... 36 MAT-LINK: MATernaL and Infant Network to Understand Outcomes Associated with Treatment for Opioid Use Disorder during Pregnancy ................................................................. 38 Strengthening the Data Infrastructure for Outcomes Research on Mortality Associated with Opioid Poisonings ......................................................................................................................... 40 VIII. Food and Drug Administration (FDA) .............................................................................44 Bridging the PCOR Infrastructure and Technology Innovation through Coordinated Registry Networks (CRN) Community of Practice (COP) .......................................................................... 44 SHIELD—Standardization of Lab Data to Enhance Patient-Centered Outcomes Research and Value-based Care.................................................................................................................. 48 Draft 2020 PCORI Annual Report | i Building the Data Capacity for Patient-Centered Outcomes Research: The 2020 Annual Report IX. National Institutes of Health (NIH)...................................................................................51 Emergency Medicine Opioid Data Infrastructure: Key Venue to Address Opioid Morbidity and Mortality (Project CODE PRO – Capturing Opioid Use Disorder Electronically and Patient Reported Outcomes) ........................................................................................................ 51 NIDA’s AMNET: An Addiction Medicine Network to Address the United States Opioid Crisis ... 54 Use of the ADAPTABLE Trial to Strengthen Methods to Collect and Integrate Patient-Reported Information with Other Data Sets and Assess Its Validity ............................... 56 X. Office of the Assistant Secretary for Planning and Evaluation (ASPE) ..........................59 Linking State Medicaid and Child Welfare Data for Outcomes Research on Treatment for Opioid Use Disorder ..................................................................................................................... 59 XI. Office of the National Coordinator for Health Information Technology (ONC) ............62 A Synthetic Health Data Generation Engine to Accelerate Patient-Centered Outcomes Research ...................................................................................................................................... 62 XII. Cross-Agency Funded Projects ......................................................................................64 Assessing and Predicting Medical Needs in a Disaster ............................................................... 64 Data Capacity for Patient-Centered Outcomes Research through Creation of an Electronic Care Plan for People with Multiple Chronic Conditions ............................................................... 68 Data Capacity for Patient-Centered Outcomes Research through Creation of an Electronic Care Plan for People with Multiple Chronic Conditions 2.0: Development of the Patient- facing Application ......................................................................................................................... 71 Enhancing Data Resources for Researching Patterns of Mortality in Patient-Centered Outcomes Research: Projects 1 & 2 ............................................................................................ 73 Training Data for Machine Learning to Enhance Patient-Centered Outcomes Research (PCOR) Data Infrastructure .......................................................................................................... 78 Validating and Expanding Claims-based Algorithms of Frailty and Functional Disability for Value-based Care and Payment .................................................................................................. 81 XIII. Conclusion .......................................................................................................................83 Appendix A. OS-PCORTF Project Portfolio ...........................................................................84 Appendix B. Abbreviations ....................................................................................................88 Appendix C. Glossary .............................................................................................................91 References ..............................................................................................................................93 Draft 2020 PCORI Annual Report | ii Building the Data Capacity for Patient-Centered Outcomes Research: The 2020 Annual Report List of Exhibits Exhibit 1. OS-PCORTF Framework for Building Data Capacity for PCOR ........................................ 2 Exhibit 2. Awards and Products that Address Key Functionalities Needed to Support Research ... 13 Exhibit 3. 2019 Completed Project Final Reports ............................................................................. 15 Exhibit 4. AHRQ Active Projects ....................................................................................................... 16 Exhibit 5. CDC Active Projects.......................................................................................................... 21 Exhibit 6. NCHS Data Linkage Program ........................................................................................... 22 Exhibit 7. Data Networks ................................................................................................................... 25 Exhibit 8. EHR Data Accessibility: Cancer Use Case ....................................................................... 36 Exhibit 9. MAT-LINK’s Maternal, Infant, and Child Outcomes of Interest ........................................