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2 Federal Partnerships
Pages 17-32

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From page 17...
... . He noted that more than a decade after the passage of the Health Information Technology for Economic and Clinical Health Act of 2009, the United States has several wellfunctioning electronic health records (EHR)
From page 18...
... ONC will be releasing a new version of the U.S. Core Data for Interoperability, which is a standardized set of health data classes and constituent data elements for EHRs and for nationwide, interoperable health information exchanges.
From page 19...
... Blue Button leverages FHIR standards, also discussed by Tripathi. CMS data linkage projects that have been funded by the PCOR Trust Fund include3 • Augmenting the National Hospital Care Survey Data through Linkages with Administrative Records; • National COVID-19 Longitudinal Research Database, which is linked to CMS data; and • National Death Index -- Medicare Enrollment Data Linkage.
From page 20...
... Specifically, Section 4(a) focuses on methods for assess­ing equity, which underscores the need to collect demographic data in order to fully assess the extent of existing health disparities and the impact of health equity responses.
From page 21...
... Khau highlighted several projects that the CMS Office of Minority Health is working on, using CMS data. The Mapping Medicare Disparities Tool5 is an interactive map that allows users to identify areas of disparities between subgroups of Medicare beneficiaries (for example, by race or ethnicity)
From page 22...
... 22 FIGURE 2-1  Prevalence of diabetes in 2018. SOURCE: Workshop presentation by Meagan Khau, June 14, 2021.
From page 23...
... • Collection of Patient-Provided Information through a Mobile D ­ evice Application for Use in Comparative Effectiveness and Drug Safety Research; • Common Data Model Harmonization (CDMH) and Open Stan dards for Evidence Generation; • Cross-Network Directory Service; • CURE ID: Aggregating and Analyzing COVID-19 Treatments from EHRs & Registries Globally; • Developing a Strategically Coordinated Registry Network (CRN)
From page 24...
... and Commercial Claims; • Making Medicaid Data More Accessible Through Common Data Models and FHIR APIs; • SHIELD - Standardization of Lab Data to Enhance Patient-­Centered Outcomes and Value-Based Care; • Source Data Capture from Electronic Health Records (EHRs) : ­Using Standardized Clinical Research Data; • Standardization and Querying of Data Quality Metrics and Char acteristics for Electronic Health Data; • Utilizing Data from Various Data Partners in a Distributed M ­ anner; and • WHT-CRN Project: Bridging the PCOR Infrastructure and Innova tion through Coordinated Registry Network (CRN)
From page 25...
... She argued that the integration of health care and clinical research will require a change in culture that begins at the point of care, where data are generated. Regarding suggestions for building an interoperable data capacity for PCOR, Rocca highlighted the following: • Linking existing databases within HHS and other federal govern ment agencies and the private sector; • Developing a universal data use agreement; • Applying tools, standards, and services developed as part of PCOR Trust Fund projects to other types of HHS data; • Encouraging the development of common architectures and inte gration frameworks to enable interoperability, rather than develop ing single solutions; and • Focusing the PCOR Trust Fund investments on cutting-edge solu tions that may result in technical leaps.
From page 26...
... PPRL solutions are now available through commercial vendors, and PPRL algorithms have been applied to large, commercially available health datasets, such as laboratory data, pharmacy data, claims information, and EHRs. There are also many published examples of real-world applications of PPRL and their associated benefits, and Gundlapalli argued that these benefits have to be balanced with the risk to privacy and the efforts required to implement PPRL solutions.
From page 27...
... An example is the NICHD Data and Specimen Hub, which allows clinical research data, including PROs, to be posted and shared. NICHD also funds the Data Sharing for Demographic Research infrastructure, which provides curation and archiving services for data relevant to health policy and health systems research as well as broader demographic research.
From page 28...
... These linkages would make it possible to monitor the impact of emerging public health concerns, such as infectious diseases, to examine the adverse effects of commonly used medications during pregnancy and postpartum on the pregnant person and the infant, and to determine predictive models that can help address various inequities such as inequalities in maternal morbidity and mortality. Cernich noted that NICHD is leading a consortium of projects focused on maternal health to enable coordination and collaboration within this portfolio through the PCOR Trust Fund.
From page 29...
... While a complete align ment is probably impossible, HHS efforts to harmonize standards are helping remove the barriers posed by the lack of standardization. Kean also underscored the value of HHS support for the development of open source tools around agreed-upon standards and data models so that the consistency of the work around clinical data improves and also reduces the barrier to entry.
From page 30...
... Another one could be a situation where trust between entities is a paramount concern. Kean said that the DaVINCI project shows the feasibility of building interoperable data capacity.
From page 31...
... However, the discussion also made it clear that awareness about the data infrastructure projects is limited among external stakeholders and end users. 9 https://www.nap.edu/catalog/26297/building-data-capacity-for-patient-centered-outcomes research-interim-report.
From page 32...
... While there is frequent collaboration among HHS partners on PCOR data infrastructure work, and the Office of the Assistant Secretary for Planning and Evaluation's public website contains a comprehensive list of past and current projects funded from the PCOR Trust Fund, additional dissemination efforts focused on external stakeholders could further increase the usefulness of these investments. CONCLUSION 2-2: There is a need to increase awareness among all stakeholders about new data infrastructure developments funded by the Patient-Centered Outcomes Research Trust Fund.


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