Suggested Citation:"Appendix E: Office of the Secretary PCOR Trust Fund Project Portfolio." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
×
Suggested Citation:"Appendix E: Office of the Secretary PCOR Trust Fund Project Portfolio." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
×
| Project Title | Description | Implementing Agency | FY Funded | Status | Functionality Addressed* |
|---|---|---|---|---|---|
| Using Machine Learning Techniques to Enable Health Information Exchange to Support COVID-19-Focused Patient-Centered Outcomes Research (PCOR) | This project will implement data standardization, machine learning techniques for preserving data privacy, and application programming interfaces (API) to support the use of health data obtained from health information exchanges (HIEs) for research. | ONC | 2021 | Active | 1, 4 |
| Building Infrastructure and Evidence for COVID-19 Related Research, Using Integrated Data from National Center for Health Statistics (NCHS) Data Linkage Program | This project will reduce barriers to accessing linked datasets for PCOR by developing publicly available synthetic linked data products. These products will integrate data on social determinants of health (SDOH), health-related data, and administrative data while protecting participant privacy. Additionally, the product will allow for more timely access of COVID-19 pandemic data. The project will also develop a public-facing dashboard with information generated from the linked data. | NCHS-CDC | 2021 | Active (no start date noted) | 3, 4 |
| Multistate Emergency Medical Services (EMS) and Medicaid Dataset (MEMD): A Linked Dataset for Patient-Centered Outcomes Research | This project will develop the Multistate EMS and MEMD. This first-of-its-kind dataset will allow researchers to conduct PCOR related to Medicaid beneficiaries’ health outcomes following their encounter with EMS. | ASPE-BHDAP, NHTSA EMS | 2021 | Active (no start date noted) | 3, 4 |
| Making Medicaid Data More Accessible Through Common Data Models and FHIR APIs | This project seeks to increase data capacity or infrastructure that will support research that will guide decisions about the efficacy of health interventions utilized in Medicaid and Children’s Health Insurance Programs. | FDA, NIH/NLM | 2021 | Active | 1, 2, 3 |
Suggested Citation:"Appendix E: Office of the Secretary PCOR Trust Fund Project Portfolio." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
×
| Understanding COVID-19 Trajectory and Outcomes in the Context of Multiple Chronic Conditions (MCC) through e-Care Plan Development | This project expands the previously funded project, the clinician and patient-facing electronic care (eCare) plan applications and Fast Healthcare Interoperability Resources (FHIR) implementation guide. It updates and exchanges health data for patients with multiple chronic conditions. This expansion will also add data elements for COVID-19 and post-acute sequelae of COVID-19 (PASC). The project will also develop a new unpaid-caregiver-facing application that includes COVID-19 and PASC data. | AHRQ, NIH/NIDDK | 2021 | Active | 1, 2, 3 |
| Dataset on Intellectual and Developmental Disabilities: Linking Data to Enhance Person-Centered Outcomes Research | This project will create a dataset by linking state-level data sources from four to six states. The state-level data will include the National Core Indicators In-Person Survey, Supports Intensity Scale, Medicaid claims, and other relevant state data sources. The resulting dataset will allow researchers to analyze relationships between several key variables and person-centered outcomes for individuals with intellectual disabilities or developmental disabilities before and during the COVID-19 pandemic. | ASPE-BHDAP | 2021 | Active (no start date noted) | 3, 4 |
| CURE ID: Aggregating and Analyzing COVID-19 Treatments from Electronic Health Records (EHRs) & Registries Globally | This project will update the CURE ID online platform and mobile application by adding the capacity to collect case reports for drug repurposing in the treatment of COVID-19. The update will also add automated extraction and manual data collection abilities to obtain data from EHRs and clinical disease registries. | FDA, NIH, Implemented through NCATS | 2021 | Active (no start date noted) | 3, 4 |
Suggested Citation:"Appendix E: Office of the Secretary PCOR Trust Fund Project Portfolio." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
×
| Project Title | Description | Implementing Agency | FY Funded | Status | Functionality Addressed* |
|---|---|---|---|---|---|
| Severe Maternal Morbidity and Mortality EHR Data Infrastructure | This project will establish a primary infrastructure for EHRs that will enable PCOR on maternal morbidity and mortality. The anticipated final outcome will be a “Health Level Seven (HL7)® FHIR® Implementation Guidance encompassing pregnancy, pregnancy outcomes, and pregnancy-related conditions, co-morbidities, and procedures.” | NIH, ONC, CDC | 2021 | Active | 1, 3, 4 |
| MAT-LINK2: Expansion of MATernaL and Infant NetworK to Understand Outcomes Associated with Treatment for Opioid Use Disorder during Pregnancy | This project will expand on MAT-LINK, a previously funded data platform, and associated standardized elements for collecting maternal and infant data for women treated for opioid use disorder (OUD) during pregnancy. The update will create a more robust and representative data repository by including data from additional clinical sites and collect data on infants through age 6 to allow for additional assessment of development impacts. | CDC | 2021 | Active | 1, 3, 4 |
| Enhancing Surveillance of Maternal Health Clinical Practices and Outcomes with Federally Qualified Health Centers’ (FQHCs) Electronic Health Records Visit Data | This project will enhance and expand National Ambulatory Medical Care Survey data collection procedures from 2021 for maternal health visits to FQHCs to 2022 and increase the sample of FQHCs included. The project will also evaluate the feasibility of creating new data linkages to National Death Index (NDI) and U.S. Department of Housing and Urban Development (HUD) administrative data sources. | CDC | 2021 | Active | 1, 3, 4 |
Suggested Citation:"Appendix E: Office of the Secretary PCOR Trust Fund Project Portfolio." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
×
| Data Linkage: Evaluating Privacy Preserving Record Linkage Methodology and Augmenting the National Hospital Care Survey with Medicaid Administrative Records | This project will evaluate different methods for privacy preserving record linkage and expand on existing data resources to create new linked datasets for PCOR across the continuum of care. | CDC | 2020 | Active | 3, 4, 5 |
| Developing a Multi-State Network of Linked Pregnancy Risk Assessment Monitoring System (PRAMS) and Clinical Outcomes Data for Patient-Centered Outcomes Research | This project will build on the existing PRAMS infrastructure by linking survey data with additional data such as hospital discharge data and Medicaid claims. | CDC | 2020 | Active | 3, 5 |
| 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 | This project builds on the eCare plan 1.0 by creating additional patient-use resources and adding capabilities based on feedback from the pilot. | NIDDK, AHRQ | 2020 | Active | 1, 2, 3, 4 |
| Childhood Obesity Data Initiative (CODI): Integrated Data for Patient-Centered Outcomes Research Project 2.0 | This project continues work done for the CODI 1.0 project. It will expand existing CODI infrastructure to accommodate linking individual pediatric data from diverse sources for PCOR. The resulting CODI 2.0 project is expected to improve the initiative’s technical capabilities and sustainability. | CDC | 2020 | Active | 1, 3, 4 |
Suggested Citation:"Appendix E: Office of the Secretary PCOR Trust Fund Project Portfolio." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
×
| Project Title | Description | Implementing Agency | FY Funded | Status | Functionality Addressed* |
|---|---|---|---|---|---|
| Training Data for Machine Learning to Enhance Patient-Centered Outcomes Research (PCOR) Data Infrastructure | This project will create high-quality training datasets for use in training algorithms for machine learning that will result in improving the ability of researchers to use artificial intelligence in PCOR. The project will also develop and disseminate machine learning algorithms and implementation guides for use in PCOR. | ONC, NIH/NLM | 2019 | Active | 4 |
| A Synthetic Health Data Generation Engine to Accelerate Patient-Centered Outcomes Research | This project will convene a technical expert panel to develop five to seven priority use cases for development of new synthetic data modules to enhance the synthetic data that Synthea can generate. Synthea is an open-access software program that generates large volumes of high-quality and realistic synthetic patient records for use in research, including PCOR. | ONC | 2019 | Active | 5 |
| Validating and Expanding Claims-Based Algorithms of Frailty and Functional Disability for Value-Based Care and Payment | This is a 4-year-long project that will increase data capacity for conducting PCOR with attention to patient functional risk and functional status data. The project is developing validated and refined algorithms that use Medicare and/or Medicaid claims data that identify patient functional risk. These algorithms will be publicly available through the Chronic Conditions Warehouse (CCW). The project will also draft EHR-modified algorithms and a guidance report about extracting patients’ functional status data from the EHR. | ASPE, AHRQ, CDC, CMS | 2019 | Active | 3, 4, 5 |
Suggested Citation:"Appendix E: Office of the Secretary PCOR Trust Fund Project Portfolio." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
×
| Bridging the PCOR Infrastructure and Technology Innovation through Coordinated Registry Networks (CRN) Community of Practice | This project will improve CRN’s ability to capture standardized data and patient-generated data related to medical devices and link that data to other data sources. | FDA | 2019 | Active | 2, 3 |
| Surveillance Network: Maternal, Infant, and Child Health Outcomes Following Treatment of Opioid Use Disorder (OUD) During Pregnancy | This project will adapt and use the lessons learned from development of the Centers for Disease Control and Prevention (CDC) USZPIR (a surveillance system for monitoring pregnant women with a laboratory-confirmed Zika virus infection and their infants) for MAT-LINK. MAT-LINK will develop a surveillance network and data platform to collect linked data about maternal, infant, and child health following treatment for OUD during pregnancy. | CDC | 2019 | Active | 1 |
| Linking State Medicaid and Child Welfare Data for Outcomes Research on Treatment for Opioid Use Disorder and Other Behavioral Health Issues | This project seeks to link records from state level Medicaid and child welfare systems in a sample of states to create a dataset of patient-level data that includes Medicaid enrollment, diagnoses, services, claims, and child welfare outcomes. This project will result in improved data infrastructure and greater data availability for PCOR targeted at parents with children in the child welfare system with a focus on those needing treatment for OUD, other substance abuse disorders, or behavioral health diagnoses. | ASPE ACF/OPRE | 2019 | Active | 3, 4 |
Suggested Citation:"Appendix E: Office of the Secretary PCOR Trust Fund Project Portfolio." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
×
| Project Title | Description | Implementing Agency | FY Funded | Status | Functionality Addressed* |
|---|---|---|---|---|---|
| Augmenting the National Hospital Care Survey (NHCS) Data through Linkages with Administrative Records: A Project | This project links 2016 NHCS data with 2016 Centers for Medicare & Medicaid Services (CMS) Medicare Fee-for-Service claims data and HUD federal housing assistance program data. The new data linkage will improve data infrastructure to support PCOR that incorporates investigation of differences in intervention efficacy for previously unexamined subpopulations. | CDC | 2019 | Active | 3 |
| Identifying Co-Occurring Disorders among Opioid Users Using Linked Hospital Care and Mortality Data: Capstone to an Existing FY18 OS-PCORTF Project | This project will develop algorithms for use on the linked data from the FY18 project to identify hospital encounter records and death records of patients treated for an OUD that also have a diagnosis of another substance use or mental health disorder. The FY18 and FY19 projects will create linked files that allow researchers to examine data for patients for 1 year following their discharge from the hospital for an opioid-use-related event. | CDC | 2019 | Active | 3, 4, 5 |
| NIDA’s AMNet: An Addiction Medicine Network to Address the United States Opioid Crisis | This project is using data from the American Psychiatric Association’s (APA) clinical data registry (PsychPRO), APA members, and the American Society of Addiction Medicine to develop a new practice-based research network and electronic patient registry called the Addiction Medicine Network (AMNet). | NIH/NIDA | 2019 | Active | 2, 3, 4 |
Suggested Citation:"Appendix E: Office of the Secretary PCOR Trust Fund Project Portfolio." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
×
| Data Capacity for Patient-Centered Outcomes Research through Creation of an Electronic Care Plan for People with Multiple Chronic Conditions | This project is developing an interoperable eCare plan by enabling aggregation of critical patient data from across the multiple settings where a patient with multiple chronic conditions receives care and sharing that data with all of the patient’s health team members. | AHRQ, NIDDK | 2019 | Active | 3, 4 |
| Making Electronic Health Record (EHR) Data More Available for Research and Public Health | This project is developing an application that uses existing data and exchange standards to facilitate data exchange between differing EHRs, research, and public health record systems in real time. | CDC | 2019 | Active | 1 |
Suggested Citation:"Appendix E: Office of the Secretary PCOR Trust Fund Project Portfolio." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
×
| Project Title | Description | Implementing Agency | FY Funded | Status | Functionality Addressed* |
|---|---|---|---|---|---|
| SHIELD - Standardization of Lab Data to Enhance Patient-Centered Outcomes Research and Value-Based Care | This project is building on the work of the Systemic Harmonization and Interoperability Enhancement for Laboratory Data (SHIELD) collaborative by creating and disseminating code-mapping manuals to ensure that the same LOINC (Logical Observation Identifiers Names and Codes) are used for the same in-vitro diagnostic device (IVD) in EHRs across different laboratories. This project seeks to improve semantic interoperability across systems. The SHIELD collaborative is a multi-agency/stakeholder network consisting of the Food and Drug Administration (FDA), CDC, National Institutes of Health (NIH), Office of the National Coordinator for Health Information Technology (ONC), CMS, U.S. Department of Veterans Affairs (VA), IVD manufacturers, EHR vendors, laboratories, College of American Pathologists, standards developers, Pew Charitable Trusts, National Evaluation System for Healthcare Technology, and academia. | FDA | 2019 | Active | 3, 5 |
Suggested Citation:"Appendix E: Office of the Secretary PCOR Trust Fund Project Portfolio." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
×
| Enhancing Patient-Centered Outcomes Research (PCOR): Creating a National Small-Area Social Determinants of Health Data Platform | This project is developing a set of standardized and consolidated national databases focused on valid and reliable SDOH factors at the small-area and other geographic levels, using existing federal agency databases, including those from the Agency for Healthcare Research and Quality (AHRQ), Health Resources and Services Administration (HRSA), CDC, Assistant Secretary for Planning and Evaluation (ASPE), and NIH. | AHRQ | 2019 | Active | 1, 3 |
| Assessing and Predicting Medical Needs in a Disaster | This project is creating a data platform to facilitate the reporting and analysis of data related to medical encounters during a public health emergency or disaster. The platform will be able to collect and share medical encounter data during a disaster in real time. The platform will also facilitate disaster-response-and-recovery-specific PCOR. | AHRQ, ASPR | 2018 | Active | 4 |
| Capstone for the Outcomes Measures Harmonization Project | This project is creating a tool that links clinical data to two different patient registries and then facilitates the exchange of data between the patient registries and EHRs at the clinical sites. The resulting instructions and pieces of code are expected to assist researchers and registry developers to integrate clinical EHR systems and registries to facilitate PCOR. | AHRQ | 2018 | Active | 3, 4 |
Suggested Citation:"Appendix E: Office of the Secretary PCOR Trust Fund Project Portfolio." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
×
| Project Title | Description | Implementing Agency | FY Funded | Status | Functionality Addressed* |
|---|---|---|---|---|---|
| Emergency Medicine Opioid Data Infrastructure - Key Venue to Address Opioid Morbidity and Mortality | This project created an OUD Data Dictionary to facilitate capture of relevant data from EHRs. It also created and conducted a pilot test of a mobile app for patients to use to complete post-discharge electronic surveys. | NIH/NIDA | 2018 | Completed | 1, 2, 3 |
| Childhood Obesity Data Initiative (CODI): Integrated Data for Patient-Centered Outcomes Research Project | This project is linking pediatric clinical EHR data, weight-management program intervention data, and census information to improve availability of that data for PCOR focused on childhood obesity. | CDC | 2018 | Active | 1, 3, 4 |
| Strengthening the Data Infrastructure for Outcomes Research on Mortality Associated with Opioid Poisonings | This project is redesigning the Medical Mortality Data System (MMDS) to capture and electronically code specific drug information found in the text fields of death certificate records. It is also developing and conducting a pilot test of an FHIR© API to facilitate data exchange between medical examiner and coroner case management systems and states’ Electronic Death Registration System. This project is also establishing an NCHS Board of Scientific Advisors advisory committee to ensure that changes to the MMDS match the needs of end users. | CDC | 2018 | Active | 3, 4 |
Suggested Citation:"Appendix E: Office of the Secretary PCOR Trust Fund Project Portfolio." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
×
| Enhancing Identification of Opioid-Involved Health Outcomes Using Linked Hospital Care and Mortality Data | This project is linking data from the NHCS, the NDI, and the National Vital Statistics System restricted use mortality files for drug overdose deaths to create a merged dataset for PCOR. This project includes an investment in infrastructure for improved hospital data collection and reporting and to disseminate information to promote use of the merged dataset. | CDC | 2018 | Active | 1, 4 |
| Technologies for Donating Medicare Beneficiary Claims Data to Research Studies | This project modified the CMS Blue Button platform to allow Medicare beneficiaries to allow access to their claims data for research purposes. Additionally, the project resulted in an application that allows researchers to view patient data from the CMS Blue Button platform and clinical data and an application that lets developers access CMS Blue Button data. | CMS, NIH | 2017 | Completed | 3, 5 |
| Developing a Strategically Coordinated Registry Network (CRN) for Women’s Health Technology | This project created a CRN by linking existing and new women’s health technology registries with established major data networks. The project created the necessary infrastructure for PCOR focused on evaluations of medical devices with clinical application unique to women. | FDA, NIH/NLM, ONC | 2017 | Completed | 1 |
| Harmonization of Various Common Data Models and Open Standards for Evidence Generation | The project developed a Common Data Model (CDM) to organize data from diverse clinical setting sources, including EHRs, insurance billing claims, and patient registries. The resulting CDM created an enhanced data infrastructure for PCOR. | FDA, NIH/NLM, NIH/NCI, NIH/NCATS, ONC | 2017 | Completed | 1, 3, 4 |
Suggested Citation:"Appendix E: Office of the Secretary PCOR Trust Fund Project Portfolio." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
×
| Project Title | Description | Implementing Agency | FY Funded | Status | Functionality Addressed* |
|---|---|---|---|---|---|
| Enhancing Data Resources for Researching Patterns of Mortality in Patient-Centered Outcomes Research | This project is working to link the NDI data to NHCS inpatient and ED claims data, CMS Master Beneficiary Summary File (MBSF), and CMS CCW. The project also seeks to develop a long term strategy to support access of the NDI for PCOR. | CDC, FDA, CMS | 2017 | Active | 3, 4, 5 |
| Advancing the Collection and Use of Patient-Reported Outcomes (PROs) through Health Information Technology (IT) | This project created technical tools to standardize PRO data integration into EHRs and other health IT solutions to facilitate easier sharing of that information for PCOR. | AHRQ, ONC | 2017 | Completed | 2, 4 |
| PCOR: Privacy and Security Blueprint, Legal Analysis and Ethics Framework for Data Use, & Use of Technology for Privacy | This project created a legal and ethical framework for use of data and developed a best practices white paper for use of consent technology in research. | CDC, ONC | 2015 | Completed | 1, 2, 3, 4 |
| Use of the ADAPTABLE Trial to Strengthen Methods to Collect and Integrate Patient-reported Information with Other Data Sets and Assess Its Validity | This project built on lessons learned from Aspirin Dosing: A Patient-centric Trial Assessing Benefits and Long Term Effectiveness (ADAPTABLE) to develop a Patient-Reported Data Assessment tool that allowed researchers to compare patient-reported data with data from EHRs. | NIH | 2016 | Completed | 1, 2, 3, 4 |
Suggested Citation:"Appendix E: Office of the Secretary PCOR Trust Fund Project Portfolio." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
×
| Standardization and Querying of Data Quality Metrics and Characteristics for Electronic Health Data | This project created and implemented standards for metadata and a querying system to determine the quality, fitness for use, and completeness of electronic health data. | FDA | 2016 | Completed | 4, 5 |
| Utilizing Data from Various Data Partners in a Distributed Manner | This project developed a new open-source software application that allowed for researchers to perform distributed regression analyses of health data that were carried out at different institutions without also sharing associated potentially identifiable information across those different sites. | FDA | 2015 | Completed | 4, 5 |
| Improving the Mortality Data Infrastructure for Patient-Centered Outcomes (PCOR) | This project improved on existing infrastructure to facilitate more timely delivery of state death records to the NDI database and linked NDI data to hospital datasets collected at the national level. This created a more robust source for PCOR. | CDC | 2015 | Completed | 1, 3 |
| Development of a Natural Language Processing (NLP) Web Service for Public Health Use | This project created a publicly available NLP web service to assist researchers to convert unstructured clinical information to structured data with standardized coding. | CDC, FDA | 2016 | Completed | 4, 5 |
| Security and Privacy Standards for Patient Matching, Linking and Aggregation | This project developed the Patient Data Demographic Quality Framework to improve patient data standardization and matching across different organizations. It also developed a security tool that allows patients to control how their data is shared. | ONC | 2015 | Completed | 3, 4 |
Suggested Citation:"Appendix E: Office of the Secretary PCOR Trust Fund Project Portfolio." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
×
| Project Title | Description | Implementing Agency | FY Funded | Status | Functionality Addressed* |
|---|---|---|---|---|---|
| Harmonization of Clinical Data Element Definitions for Outcome Measures in Registries | This project created an Outcomes Measures Framework to develop standardized outcome measures for clinical practice and PCOR. It also created a library of common data definitions for use in EHRs that will facilitate collection of standardized outcome data. | AHRQ | 2016 | Completed | 1, 3 |
| Source Data Capture from Electronic Health Records: Using Standardized Clinical Research Data | This project created a framework for development of systems used for electronic source data capture in regulated clinical investigations. | FDA | 2016 | Completed | 1, 4 |
| Creation of LOINC Equivalence Classes | This project used the LOINC coding system for laboratory tests and clinical observations to develop a mechanism to facilitate interoperable HIE between different health IT systems. | NIH | 2016 | Completed | 1 |
| Cross Network Directory Service | This project developed an open source interoperable service that facilitates data partner participation across multiple data research networks. The services allow researchers to search across multiple data networks, as well as share knowledge and analytic capabilities. | FDA | 2015 | Completed | 5 |
| Collection of Patient-Provided Information through a Mobile Device Application for Use in Comparative Effectiveness and Drug Safety Research | This project created the infrastructure for a mobile application to collect patient-generated health data (PGHD) and link that data to a data partner participating in the Sentinel distributed network. | FDA | 2015 | Completed | 2, 3 |
Suggested Citation:"Appendix E: Office of the Secretary PCOR Trust Fund Project Portfolio." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
×
| Conceptualizing a Data Infrastructure for the Capture and Use of Patient-Generated Health Data | This project developed a policy framework for use of PGHD for research and delivery of care. It also conceptualized the development process for the data infrastructure required to facilitate patient sharing of data with health care providers, other caregivers, and researchers. | ONC | 2015 | Completed | 1, 2 |
| Improving Beneficiary Access to their Health Information through an Enhanced Blue Button Service | This project was a conceptual redesign of the CMS Blue Button platform to standardize data on the platform for acceptance by multiple applications and allow Medicare beneficiaries using the platform to make decisions on participation in research based on their preferences. It also made it easier for researchers to selectively pull Medicare claims data based on the needs of their study. | CMS | 2016 | Completed | 5 |
| Improving Beneficiary Access to Health Information: A Plan to Enhance “Blue Button” | This was an initiative to develop a plan to update the CMS Blue Button platform. The project defined functional requirements for improved functionality by engaging federal stakeholders, private sector developers, and third-party services. The project also developed campaign materials to raise consumer awareness about Blue Button. | CMS | 2014 | Completed | 2, 4 |
| Strengthening and Expanding the Community Health Applied Research Network (CHARN) Registry to Conduct Patient-Centered Outcomes Research (PCOR) | This project expanded and updated the CHARN data warehouse and improved the data infrastructure. It also created a data access plan to facilitate access to the CHARN data warehouse by researchers outside the network. | PCOR, HRSA | 2014 | Completed | 1, 4 |
Suggested Citation:"Appendix E: Office of the Secretary PCOR Trust Fund Project Portfolio." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
×
| Project Title | Description | Implementing Agency | FY Funded | Status | Functionality Addressed* |
|---|---|---|---|---|---|
| Creating the Foundational Building Blocks for the Learning Health Care System: Data Access Standards for Electronic Health Records (EHRs) | This project created an API that facilitated standardized extraction of data from EHRs for PCOR. | ONC | 2013 | Completed | 5 |
| Creating the Foundational Blocks for the Learning Health Care System: Structured Data Capture (SDC) | This project developed technical and functional specifications needed to enable an EHR to retrieve and display standardized health data, enter that data in a structured form or template, then store and/or submit that to an outside data repository. | ONC | 2013 | Completed | 1, 5 |
| Expanding Data Collection for the National Program of Cancer Registries (NPCR) for Comparative Effectiveness Research (CER) | This project enhanced existing cancer registries by extending longitudinal data collection and creating tools that facilitated greater reporting of data from EHRs to central cancer registries for CER. | CDC | 2013 | Completed | 1, 4 |
| Comparative Effectiveness Research (CER) Inventory | This project was originally designed to develop a web-based tool to categorize and catalogue federal and non-federal CER activities. However, during the project, rapidly evolving technology allowed existing web-based search engines to surpass the CER tool under development and it was retired. | ASPE | 2012 | Completed | 3, 5 |
Suggested Citation:"Appendix E: Office of the Secretary PCOR Trust Fund Project Portfolio." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
×
| Beta Testing the MultiPayer Claims Database (MPCD) | This project was a beta test of the MPCD to determine whether it could be used as a data source for CER. | ASPE | 2012 | Completed | 3, 5 |
| Maintenance and Support of the Chronic Conditions Warehouse (CCW) for Comparative Effectiveness Research (CER) | This project maintained the CCW and increased opportunities for PCOR researchers to conduct projects through the CCW Virtual Research Data Center. | CMS | 2012 | Completed | 3, 5 |
| Development of Data Infrastructure for Use of Electronic Health Records (EHRs) in Comparative Effectiveness Research (CER) | This project created the Common Data Elements (CDE) Repository which was designed to allow access to the structured human- and machine-readable definitions of data elements that are required or recommended by NIH for use in research. | ONC, NLM | 2012 | Completed | 1, 5 |
*Functionalities:
1 - Standardized Collection of Standardized Clinical Data
2 - Collection of Participant Provided Information
3 - Linking of Clinical and Other Data for Research
4 - Use of Clinical Data for Research
5 - Use of Enhanced Publicly Funded Data Systems for Research
SOURCE: https://aspe.hhs.gov/collaborations-committees-advisory-groups/os-pcortf/explore-portfolio.
Suggested Citation:"Appendix E: Office of the Secretary PCOR Trust Fund Project Portfolio." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
×
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Suggested Citation:"Appendix E: Office of the Secretary PCOR Trust Fund Project Portfolio." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
×
Suggested Citation:"Appendix E: Office of the Secretary PCOR Trust Fund Project Portfolio." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
×
Suggested Citation:"Appendix E: Office of the Secretary PCOR Trust Fund Project Portfolio." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
×
Suggested Citation:"Appendix E: Office of the Secretary PCOR Trust Fund Project Portfolio." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
×
Suggested Citation:"Appendix E: Office of the Secretary PCOR Trust Fund Project Portfolio." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
×
Suggested Citation:"Appendix E: Office of the Secretary PCOR Trust Fund Project Portfolio." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
×
Suggested Citation:"Appendix E: Office of the Secretary PCOR Trust Fund Project Portfolio." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
×
Suggested Citation:"Appendix E: Office of the Secretary PCOR Trust Fund Project Portfolio." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
×
Suggested Citation:"Appendix E: Office of the Secretary PCOR Trust Fund Project Portfolio." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
×
Suggested Citation:"Appendix E: Office of the Secretary PCOR Trust Fund Project Portfolio." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
×
Suggested Citation:"Appendix E: Office of the Secretary PCOR Trust Fund Project Portfolio." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
×
Suggested Citation:"Appendix E: Office of the Secretary PCOR Trust Fund Project Portfolio." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
×
Suggested Citation:"Appendix E: Office of the Secretary PCOR Trust Fund Project Portfolio." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
×
Suggested Citation:"Appendix E: Office of the Secretary PCOR Trust Fund Project Portfolio." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
×
Suggested Citation:"Appendix E: Office of the Secretary PCOR Trust Fund Project Portfolio." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
×
Suggested Citation:"Appendix E: Office of the Secretary PCOR Trust Fund Project Portfolio." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
×
Suggested Citation:"Appendix E: Office of the Secretary PCOR Trust Fund Project Portfolio." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
×
Suggested Citation:"Appendix E: Office of the Secretary PCOR Trust Fund Project Portfolio." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
×
Suggested Citation:"Appendix E: Office of the Secretary PCOR Trust Fund Project Portfolio." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
×
Suggested Citation:"Appendix E: Office of the Secretary PCOR Trust Fund Project Portfolio." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
×
