Loading...
Loading...
Loading...
Loading...
The Unified Research data Sharing and Access (URSA) Initiative was launched in 2015 with the overall goal of making electronic health record (EHR) and other health data accessible and usable for research purposes across Rhode Island. This initiative is supported by Advance RI-CTR and coordinated by the Advance RI-CTR Biomedical Informatics, Bioinformatics, and Cyberinfrastructure Enhancement (BIBCE) Core with leadership and expertise provided by the Brown Center for Biomedical Informatics (BCBI).
The Advance RI-CTR BIBCE Core collaborates with Brown University's Office of Information Technology and the Division of Research, including Research Integrity and Research Agreements & Contracting, and health data partners across Rhode Island to:
Coordinate processes for health data sharing and secure access within and across institutions;
Develop the requisite legal, ethical, and technical infrastructure between Brown and health data sharing partners;
Establish cross-institutional governance, including standard policies, procedures, and protocols for appropriate sharing and use of health data; and,
Provide documentation and training for health data requests, access, and use.
Through the URSA Initiative, the BIBCE Core provides expertise and infrastructure for conducting research using large-scale health datasets. The BIBCE Core is available to help researchers navigate the process of identifying options and solutions for storing, managing, and analyzing data from health data partners or other data sources.
Complete Advance RI-CTR's Service Request Form to schedule a consultation with the BIBCE Core.
Visit other chapters in CODIAC for Health using the Table of Contents or menu in the upper left corner.
Below is a list of current Health Data Partners (HDPs) engaged with the URSA Initiative.
To learn more about requesting data from any of these HDPs, please submit the Advance RI-CTR Service Request Form.
Care New England uses the Epic and Cerner electronic health record (EHR) systems for outpatient and inpatient respectively. Both systems have a suite of reporting and analytic tools for use within the health systems. Reports and data extracts can also be requested.
Since March 2015, Brown University Health has used LifeChart built on the Epic EHR platform. There are a variety of reporting and analytic tools, such as SlicerDicer and Reporting Workbench, which can be used within Brown University Health. Reports or data extracts can also be requested.
The Rhode Island Department of Health supports and maintains a range of health datasets and systems that can be used for research.
Rhode Island’s All-Payer Claims Database (RI APCD or HealthFacts RI) is a large-scale database that systematically collects healthcare claims data from a variety of payer sources, including Medicare, Medicaid, and RI’s nine largest commercial payers. Through the URSA Initiative, licensed researchers may access and analyze RI APCD data in the secure URSA Stronghold computing environment.
Founded in 2001, the Rhode Island Quality Institute (RIQI) is the state-designated Regional Health Information Organization (RHIO). RIQI manages CurrentCare, Rhode Island’s state-designated Health Information Exchange (HIE). CurrentCare contains EHR and health data from all acute care hospital systems in Rhode Island and from many ambulatory and laboratory facilities across the state. RIQI Data Analytics and Reporting has provided public health and research data to external partners such as the Rhode Island Department of Health and Brown University. More information about the data in CurrentCare can be found in the CurrentCare Data Guide.
The Brown Center for Biomedical Informatics (BCBI) and the Advance RI-CTR Biomedical Informatics, Bioinformatics and Cyberinfrastructure Enhancement (BIBCE) Core serve as liaisons between researchers and health data partners to create and submit accurate and complete data requests as well as oversee the governance of health data transferred to and accessed at Brown University. Each health data partner has unique administrative processes for requesting their data as well as guidelines for working with the data and sharing results.
Please submit an Advance RI-CTR Service Request Form to start the process.
Aggregate Statistics – basic counts and descriptive statistics to characterize a population of interest (e.g., number of patients or encounters meeting specified criteria).
De-Identified Dataset – as defined by the HIPAA Privacy Rule, excludes the 18 protected health information (PHI) elements that could be used to identify individuals or the individual's relatives, employers, or household members.
Limited Dataset – as defined by the HIPAA Privacy Rule, includes a limited set of identifiable information that excludes 16 direct identifiers but may include city, state, zip code, elements of date, and other numbers, characteristics, or codes not listed as direct identifiers.
Identified Dataset – in some cases, direct identifiers may be needed (e.g., street addresses for geocoding or demographics for linking datasets) that may be subsequently removed to create a limited or de-identified dataset.
The URSA Data Request Form (UDRF) was designed by the Advance RI-CTR BIBCE Core and BCBI for requests made to Rhode Island health data partners. The UDRF is used to structure the cohort definition and dataset extraction fields in a computable manner. It can also be used to document a research study extraction specification or communicate extraction details to research team programmers. Each section should be reviewed and approved by the study PI.
Contact the Advance RI-CTR BIBCE Core via the Advance RI-CTR Service Request Form to initiate a new data request. The BIBCE Core will provide a copy of the URSA Data Request Form as well as additional data request process details.
A core component of the URSA Initiative is Brown's Stronghold. Stronghold is a secure computing and storage environment that enables Brown researchers and associates to analyze sensitive data while complying with regulatory or contractual requirements.
Stronghold is maintained by the Brown University's Center for Computation and Visualization (CCV) in the Office of Information Technology (OIT). To learn more about Stronghold, you may refer to CCV's Stronghold Documentation.
URSA Stronghold is one of the research "tenants" within Stronghold. It is collaboratively managed by CCV, the Brown Center for Biomedical Informatics (BCBI), and the Biomedical Informatics, Bioinformatics, and Cyberinfrastructure Enhancement (BIBCE) Core of Advance RI-CTR. URSA Stronghold offers both Linux and Windows computing platforms; database management systems such as Microsoft SQL, PostgreSQL, and MySQL; and, a broad range of data analysis tools including Julia, Python, R, SAS, and Stata.
Researchers may work within the URSA tenant or request their own dedicated Stronghold tenant. Refer to Brown CCV's documentation for more information about available features and how to request a Stronghold tenant.
Oscar (Ocean State Center for Advanced Resources) is Brown University's high performance computing cluster. Oscar is maintained and supported by Brown's Center for Computation and Visualization (CCV).
Brown’s Data Risk Classifications are used to determine data access and storage options. Stronghold is the institutionally-designated environment for Risk Level 3, identified datasets that include protected health information (PHI) or personally identifiable information (PII). With approval from the data provider, researchers may leverage Brown's Oscar high-performance computing environment or other Brown-managed computers for the storage and analysis of (Brown Risk Level 2) datasets. In addition, Brown’s File Service for Researchers can be used for storage of de-identified data and other research files. Data analysis is initiated "locally" on a researcher's computer while the data remain secure.
