OS-PCORTF Themes and Focus Areas

Building Data Capacity for Patient-Centered Outcomes Research (PCOR) for COVID-19: Highlights of Seven OS-PCORTF Funded Multiagency Data Initiatives

This report describes seven new multiagency projects to strengthen the data infrastructure for conducting patient-centered outcomes research on COVID-19, during and after the pandemic. In general, these projects either expand the use of existing data or link datasets across Federal and State sources. Some projects advance modeling using artificial intelligence (AI) and machine learning (ML) to identify subpopulations at risk for poorer outcomes, sequelae, and the impacts of care settings and community characteristics. Other projects gather critical data on the effectiveness of repurposed treatments and vaccines for COVID-19.

Report

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Using Machine Learning Techniques to Enable Health Information Exchange to Support COVID-19-Focused Patient-Centered Outcomes Research (PCOR)

FY2021 Project

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Building infrastructure and evidence for COVID-19 related research, using integrated data from National Center for Health Statistics (NCHS) Data Linkage Program

FY2021 Project

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Multistate Emergency Medical Services (EMS) and Medicaid Dataset (MEMD): A Linked Dataset for Patient-Centered Outcomes Research

FY2021 Project

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Making Medicaid Data More Accessible Through Common Data Models and FHIR APIs

FY2021 Project 

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Understanding COVID-19 Trajectory and Outcomes in the Context of Multiple Chronic Conditions (MCC) through e-Care Plan Development

FY2021 Project

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Dataset on Intellectual and Developmental Disabilities: Linking Data to Enhance Person-Centered Outcomes Research

FY2021 Project

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CURE ID: Aggregating and Analyzing COVID-19 Treatments from EHRs & Registries Globally

FY2021 Project

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Federal Data for Conducting Patient-Centered Outcomes Research on Economic Outcomes

The objective of this report is to assess the current landscape of federal and federally funded health care data relevant to PCOR and economic analysis to identify gaps for data stewards, researchers, and future collection efforts. A targeted internet search was conducted to identify a list of outcomes relevant to PCOR economic evaluations, and federal and federally funded data sources that contain information on identified economic outcomes. Information from the search was supplemented by semi-structured individual interviews with nine key informants representing researchers, data stewards, and patient representatives. The existing federal data infrastructure captures a limited range of the full economic burden of health and health care, when considering the perspectives of patients, caregivers, employers, and insurers. No single source exists that spans the full range and all perspectives, but research from multiple data sources, and potential future data integrations, can fill in important gaps. Data linkages appear to be an efficient and important strategy for improving PCOR-relevant economic burden studies. Further standardization of PCOR economic measures across data sources may also improve comparability and utility of research findings for patients, caregivers, employers, and insurers.

Social Determinants of Health: Data Sharing at the Community Level

This report represents a landscape review of community-level efforts to address SDOH, followed by interviews with participants in three community-level initiatives that have built networks to coordinate clinical and social services. This report presents a cross-site analysis of the three initiatives, highlighting factors they identified as facilitating their efforts, the challenges they have faced thus far, their plans for continued expansion, and opportunities for federal and state entities, among other actors, to contribute to their efforts.    

Incorporating Social Determinants of Health in Electronic Health Records: A Qualitative Study of Perspectives on Current Practices Among Top Vendors

To investigate the development of software products that allow health care providers to identify and address patients SDH in health care settings, this report conducted interviews with six electronic health records (EHRs) vendors with large market shares in both ambulatory and inpatient settings. This report conducted thematic analysis of the interviews to a) identify their motivations to develop such software products, b) describe their products and uses, and c) identify facilitators and challenges to collection and use of SDH data—through their products or otherwise—either at the point of care or in population health interventions.    

Addressing the Opioid Epidemic with Better Data: An Overview of HHS Priorities and Projects to Expand Data Capacity for Patient-Centered Outcomes Research on Opioids 

This report builds on a workshop sponsored by ASPE, titled Addressing the Opioid Epidemic: Harnessing the Power of Data for Patient-Centered Research in December 2018, which showcased projects working to build the data infrastructure for patient-centered outcomes research around opioids. 

2022 Addressing the Opioid Overdose Crisis Through Better Data: Opioids Vignette

This updated 2022 vignette provides examples of how a range of Office of the Secretary Patient-Centered Outcomes Research Trust Fund (OS-PCORTF) cross-agency projects are working to address the opioid overdose crisis by 1) Improving Timeliness and Quality of Outcomes Data 2) Building Capacity for Collection of Patient-Reported Outcomes 3) Building Linkages to Address Co-Morbidities

2021 Addressing the Opioid Crisis through Better Data and Data Infrastructure

This vignette provides examples of how a range of OS PCORTF cross-agency projects are working to address the opioid crisis by: 1) improving the quality and timeliness of outcomes data, 2) increasing collection of patient-reported information, and 3) building linkages to address co-morbid conditions that affect patient outcomes.

Data Linkage Helps Researchers Find Patterns in Opioid Use and Treatment Response among Patient’s Hospital Encounters

This spotlight highlights the National Center for Health Statistics (NCHS) within the Centers for Disease Control and Prevention (CDC) three projects to address these data infrastructure needs. Since 2017, NCHS has integrated multiple data sources to build innovative data resources that will improve researchers’ ability to analyze data on hospital care, co-occurring mental health and substance use issues, post-acute care delivery, and deaths related to opioid-involved overdose. Through utilization of these integrated data resources, researchers can gain insight on patient characteristics, patterns of care, and other risk factors that affect health outcomes in cases of opioid misuse or abuse.     

Improving Patient-Centered Outcomes Research through Better Collection and Use of Participant-Provided Information

This Vignette highlights OS-PCORTF projects that are working to expand data capacity or data infrastructure for the collection and use of participant-provided information (PPI).

Generating Real-World Evidence by Strengthening Real-World Data Sources

This vignette provides examples of how a range of OS-PCORTF cross-agency projects are working to strengthen the availability of Real-World Evidence by standardizing Real-World Data sources so they are fit for use and by building linkages across sources so data are easier to share and analyze.    

2022 Enhancing the Data Infrastructure for Women’s Health Research to Improve Women’s and Maternal Health Outcomes

This updated 2022 vignette provides examples of how a range of OS-PCORTF cross-agency projects are working to improve maternal health by 1) Enhancing Women’s Health Data for Research 2) Adding Electronic Health Records to the Suite of Maternal Health Data for Research 3) Linking Maternal Survey Data with Other Health Data.

2021 Enhancing the Data Infrastructure for Women’s Health Research to Improve Women’s and Maternal Health Outcomes

This Vignette highlights OS-PCORTF projects that are developing tools to collect, standardize, link, share, and analyze women’s and maternal health data.

State Data for Conducting Patient-Centered Outcomes Research to Improve Maternal Health: Stakeholder Discussions Summary Report

This report presents a summary of discussions with stakeholders conducted to identify key components of successful state-based maternal health data linkage initiatives, to recognize the gaps in implementing such initiatives including data use for research, and finally to understand the current status of existing linkages of state-level data with other data sources and with electronic health records.

Supporting Value-Based Care Transformation through Interoperability and Care Coordination

This Vignette highlights OS-PCORTF projects that help support care coordination and quality by 1) aggregating data across sources to better reflect patient voices among vulnerable populations; 2) building greater interoperability across electronic health record (EHR) systems to improve coordination across the continuum of care, and 3) linking and standardizing metrics for the collection of social determinants of health data to improve care and reduce health disparities.