Glossary: a list of SPARCS terms and definitions.

• Amendment Application: Required when making changes to a previously approved application, such as changing the Project Director, organization, data storage location, research scope, requested data files or elements.
• Application Expiration: Approved applications expire 2 years after receiving the final calendar year of data. An extension of up to 1 year can be requested.
• Abortion Data: Abortion-related data elements may only be released for research purposes with explicit patient consent.
• Applicant: The individual or organization requesting SPARCS data.
• Application Resubmission: During the review process, applicants may need to revise and resubmit parts of their application materials based on feedback from SPARCS.
• ASPERA(IBM): Secure file transfer tool used to provide approved SPARCS data extracts.
• Affidavit of Data Destruction: A document affirming that all SPARCS data has been properly destroyed after completing the approved research project. This is required when the data retention period expires.
• Cell Size Policy: A rule prohibiting display of values <= 10 to prevent re-identification of individuals.
• Completeness Review: Initial review to ensure all required application materials are fully completed.
• Commissioner Approval: Final approval by the New York State Department of Health Commissioner or Commissioner's designee is required for all identifiable data requests after DGC review.
• Data Extraction Criteria: Specific parameters like patient county, hospital county, age, gender etc. that SPARCS can use to extract a subset of the data to provide only the minimum necessary for the approved project.
• Data Linkage: Combining SPARCS data with other data sources like vital records or cancer registries.
• Data Delivery: SPARCS data files can be delivered annually or quarterly depending on approval. Initial files contain all approved years up to the latest complete calendar year.
• Data Security Plan: Details on how data will be stored, accessed, and kept confidential.
• Data Fees: SPARCS charges fees for data which are discounted or waived in certain circumstances.
• Data Governance Committee (DGC): The committee that reviews and approves requests for identifiable SPARCS data files.
• DGC Meetings: Regular meetings where the Data Governance Committee convenes to review and provide recommendations on identifiable data requests.
• Data Linkage: Combining SPARCS data with other data sources.
• Data Retention Period: The approved period an applicant can use the SPARCS data, initially set to 2 years after receiving the last calendar year of data.
• De-identified Data: Data that does not contain identifiable patient information, also called public use data.
• HIV/AIDS Data: HIV/AIDS records are redacted to HIPAA "Safe Harbor" standards and can only be released with patient consent or to authorized public health entities.
• Health Data NY: The open data platform where deidentified SPARCS public use files are posted.
• Indirect Identifiers: Data elements like zip codes or dates that are not direct personal identifiers but could potentially be used to re-identify individuals when combined.
• IRB (Institutional Review Board): A committee that reviews research involving human subjects to ensure ethical practices.
• Individual Data Use Agreement (DUA): A legally binding document that outlines rules for using and protecting data; completed by each individual data user on a project.
• Identifiable Data: Data containing protected health information (PHI) or personally identifiable information (PII) that could identify patients like names, addresses, dates of birth, etc. Requires IRB approval.
• Limited Data: Data containing some indirect identifiers requiring a data use agreement but redacted following HIPAA limited data standards. Does not require IRB approval.
• Non-Proprietary Report Review: SPARCS reviews reports/publications prior to release to ensure adherence to approved use and small cell size policies.
• Organizational Data Use Agreement (DUA): A legal agreement completed by an organization representative outlining data security and use requirements.
• Personal Health Information (PHI): Health data that could potentially identify an individual patient.
• Personally Identifiable Information (PII): Direct identifiers like names, addresses, dates of birth that could identify an individual.
• Project Director: The person in charge of the study who will receive the data, sign data use agreements, and ensure proper data handling.
• Publication Requirements: Requirement to provide SPARCS with drafts of any reports, articles or publications prior to submission that utilized SPARCS data.
• Project Summary: A 1-page overview of the research goals, methodology, and use of SPARCS data.
• Review and Recommendation (R&R): Document created by SPARCS staff to assist the DGC in reviewing and making recommendations on data requests.
• Review Stages: The key stages in the review process include completeness review, soundness review, security review, and Data Governance Committee review (for identifiable requests).
• Review Timeline: On average, review of an identifiable request takes around 5 months, while a limited request takes around 4 months, but timelines can vary from 2-18+ months depending on the complexity.
• Relational Data Tables: The format in which limited and identifiable SPARCS data files are provided, consisting of 14 related data tables with a .dat file extension.
• Redmine: Free and open source, web-based project management and issue tracking tool. It allows users to manage multiple projects and associated subprojects.
• SPARCS: Statewide Planning and Research Cooperative System, New York's all-payer hospital discharge data system.
• SPARCS Administrator: The individual responsible for overseeing the SPARCS data release process.
• Security Guideline: A document outlining an organization's data security practices, completed by the IT security officer.
• Security Review: Review of data security and linkage plans by a policy officer.
• Soundness Review: Review by a research scientist to assess feasibility and compliance with SPARCS requirements.