Building Data Capacity for Patient-Centered Outcomes Research Priorities for the Next Decade (2022) / Chapter Skim
Currently Skimming:
2 Background on the PCOR Data Infrastructure and Office of the Secretary PCOR Trust Fund
2 Background on the PCOR Data Infrastructure and Office of the Secretary PCOR Trust Fund
Pages 17-34
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The chapter also describes the data infrastructure projects and products that have been funded from the Office of the Secretary PCOR Trust Fund (OS-PCORTF) over the years, including prior evaluations of these efforts.
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of the Public Health Service Act instructed the Secretary of HHS to … provide for the coordination of relevant Federal health programs to build data capacity for comparative clinical effectiveness research, includ ing the development and use of clinical registries and health outcomes research networks, in order to develop and maintain a comprehensive, interoperable data network to collect, link, and analyze data on out comes and effectiveness from multiple sources including electronic health records.2 In 2020, the PCOR Trust Fund was reauthorized through 2029, as part of H.R.1865 of the Further Consolidated Appropriations Act. The most recent statute specified intellectual and developmental disabilities, as well as maternal mortality, as research priorities.
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ENABLING DATA INFRASTRUCTURE FOR PCOR AND ASPE'S STRATEGIC FRAMEWORK As the coordinator for the PCOR data infrastructure investment portfolio across HHS agencies, ASPE guides the strategic framework and vision for PCOR data infrastructure, sets funding priorities in collabora tion with agencies and departmental leaders, and coordinates interagency workgroups. ASPE's work is assisted by a Leadership Council for the OS-PCORTF, which includes representatives of several other HHS agencies, including the following: • Administration for Children and Families; • Administration for Community Living; • Assistant Secretary for Preparedness and Response; • Agency for Healthcare Research and Quality; • Centers for Disease Control and Prevention; • Centers for Medicare & Medicaid Services; • Food and Drug Administration; • Health Resources and Services Administration; • National Institutes of Health; • Office of the Chief Technology Officer; • Office of the National Coordinator for Health Information Tech nology; and • Substance Abuse and Mental Health Services Administration.
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The work of HHS agencies toward building data capacity for PCOR is guided by strategic planning that has continuously evolved over the years. The work evolves based on changes in legislation, new priorities in public health and medical care, new HHS policies, strategic opportunities, and the evolving data infrastructure needs of stakeholders.
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FIGURE 2-1 Office of the Secretary PCOR Trust Fund strategic framework for the PCOR data infrastructure. 21 SOURCE: Workshop Presentation by ASPE, May 3, 2021.
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The prioritization activity involved stakeholders with a variety of backgrounds, such as health care providers, researchers, and health policy experts, who were asked to generate lists of challenges and needed improvements for the five functionalities included in ASPE's framework for the PCOR data infrastructure. Participants were then asked to vote on the challenges and 4 https://aspe.hhs.gov/sites/default/files/migrated_legacy_files//197426/PCOR-Data-Infrastructure.
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Services refer to resources that entities can employ on demand to capture, store, or exchange either PCOR data or evidence through a centrally hosted model provided remotely (such as through the Internet) rather than provided locally or on-site.
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Improving access to data on the social determinants of health (SDOH) that are not routinely collected during care delivery Participants highlighted the need for supporting the standardized collection of data of this type and expanded access to federal datasets that contain SDOH data.
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Figure 2-2 shows how some of the thematic areas that have been funded over the years map onto the five functionalities in the current conceptual framework. TABLE 2-1 Number of Office of the Secretary PCOR Trust Fund Projects by Data Infrastructure Functionality Addressed Data Infrastructure Functionality Addressed Number of Projects Standardized collection of standardized clinical data 27 Collection of participant-provided information 12 Linking of clinical and other data for research 38 Use of clinical data for research 35 Use of enhanced publicly funded data systems for research 19 NOTE: Some projects address multiple functionalities.
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26 BUILDING DATA CAPACITY FOR PCOR TABLE 2-2 Products Produced by Office of the Secretary PCOR Trust Fund Projects Product Category Number of Products Datasets, databases, and linked data 5 Data elements and information models 3 Health information technology standards 6 Tools and guides 8 Software and analytic services 8 Data governance products 3 Publications 8 Project reports and briefs 20 Vignettes, project spotlights, and portfolio reports 15 Annual reports 6 Evaluation reports 2 Total 84 SOURCE: https://aspe.hhs.gov/collaborations-committees-advisory-groups/os-pcortf/ os-pcortf-product-library.
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TABLE 2-3 Examples of Products Produced by Office of the Secretary PCOR Trust Fund Projects NOTE: HIT = health information technology; PII = personally identifiable information; RFI = request for information; RFP = request for proposals; TEP = technical expert panel. SOURCE: Presentation by ASPE, January 29, 2021, public meeting.
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28 BUILDING DATA CAPACITY FOR PCOR TABLE 2-4 Examples of HHS Secretarial Priorities and Office of the Secretary PCOR Trust Fund Projects HHS Secretarial Lead Priority Example Projects Agency Opioids and mental An Addiction Medicine Network to Address the NIH health United States' Opioid Crisis Value-based care Validating and Expanding Claims-based Algorithms ASPE of Frailty and Functional Disability for Value-based Care and Payment Maternal mortality Surveillance Network: Maternal, Infant, and Child CDC Health Outcomes Associated with Treatment of Opioid Use Disorder during Pregnancy Social determinants of Creating a National Small-Area Social AHRQ health Determinants of Health Data Platform Emergency Assessing and Predicting Medical Needs in a ASPR preparedness Disaster Patient empowerment Technologies for Donating Medicare Beneficiary CMS/NIH and interoperability Claims Data to Research Studies Data and innovation Training Data for Machine Learning to Enhance ONC Patient-Centered Outcomes Research Data Infrastructure NOTE: NIH = National Institutes of Health; CDC = Centers for Disease Control and Prevention; AHRQ = Agency for Healthcare Research and Quality; ASPR = Office of the Assistant Secretary for Preparedness and Response; CMS = Centers for Medicare & Medicaid Services; ONS = Office of the National Coordinator for Health Information Technology. SOURCE: Presentation by ASPE, January 29, 2021, public meeting.
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outcomes. clinical research. research. 18 Projects 14 Projects 10 Projects 19 Projects 18 Projects Increase Improve Women Address the Opioids Support Value-Based Real-World Evidence and Maternal Health Epidemic Care Transformation Generation Outcomes through expanding by promoting though building linkages through establishing and data capacity or data interoperability and care across and standardizing enhancing the data infrastructure for coordination Real-World Data sources infrastructure needed patient-centered outcomes 6 Projects so they are fit for use to support women's health research on opioids 13 Projects research 8 Projects 2 Projects FIGURE 2-2 Relationship between thematic areas funded and the five PCOR data infrastructure functionalities.
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More detailed information about the projects is available on ASPE's website.6 The annual report also highlighted three completed projects that enhanced functionalities likely to be useful to researchers: 1. Adding Cause-Specific Mortality to National Center for Health Statistics' National Hospital Care Survey by Linking to the National Death Index and CMS Master Beneficiary Summary File: These linkages allow researchers to conduct more robust studies of cause-specific mortality.
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• Collection of Patient-Provided Information through a Mobile Device Application for Use in Comparative Effectiveness and Drug Safety Research • Capstone for the Outcome Measures Harmonization • Enhancing Data Resources for Researching Patterns of Mortality in Patient-Centered Outcomes Research: Project 1 – Adding Cause-Specific Mortality to NCHS's National Hospital Care Survey by Linking to the National Death Index Stakeholder Data Infrastructure Priorities • 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) • Assessing and Predicting Medical Needs in a Disaster Stakeholder data infrastructure priorities • Harmonization of Various Common Data Models and Open Standards for Evidence Generation • Enhancing Patient-Centered Outcomes Research: Creating a National Small-Area Social Determinants of Health Data Platform • Data Capacity for Patient-Centered Outcomes Research through Creation of an Electronic Care Plan for People with Multiple Chronic Conditions • Advancing the Collection and Use of Patient-Reported Outcomes through Health Information Technology • A Synthetic Health Data Generation Engine to Accelerate Patient- Centered Outcomes Research continued
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The evaluation also assessed the extent to which the portfolio a ddressed gaps that had been identified by the previous evaluation, conducted in 2017.8 The 2019 evaluation concluded that the gap most frequently a ddressed by the awards was to disseminate research findings, and it noted progress in the areas of implementing standards and improving data quality. Concerning whether the portfolio changed in response to changes in the health policy landscape, the recent evaluation noted that the portfolio expanded to include projects on enhancing the interoperability of health information, improving patient a ccess to health information, and supporting advanced data science methods.
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The 2019 expert panel further identified the following as priorities for the data infrastructure: • Addressing nontechnical challenges to the use and sharing of data, including challenges associated with data governance, data privacy, and data security; • Providing targeted support to products that may be of broad inter est and ready for adoption; and • Engaging end users during the planning phases of project awards. Finally, the 2019 expert panel identified the need for better metrics to assess the portfolio's impact, including the following: • Award-specific metrics to assess whether each individual project achieved its objectives; • Metrics that track how products from projects are being used by other projects within the portfolio; • A more prescriptive strategic roadmap and metrics that assess progress along the roadmap; and • Use of website analytics and dissemination and translation metrics that track the number and type of dissemination products, and the ways in which other research initiatives leverage award outputs.
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