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Health sciences libraries must balance data services with privacy and compliance needs
Summary
Presenters warned that health-focused research data services require attention to privacy (de-identification), HIPAA-compliant tools (e.g., REDCap), NIH-supported repositories, and data use agreements to protect human-subjects data and intellectual property.
April Wright said health-sciences libraries offering RDS need specialized procedures for protecting human-subjects data and maintaining compliance: "there is greater focus on, you know, privacy and de identification, secure storage, and use of HIPAA compliant tools like REDCap."
Wright emphasized data use agreements and repository choices are part of protecting human-subjects information and intellectual property. She cited support tasks such as advising on deposit to NIH-supported repositories and handling EHR-derived protected data, and she framed these responsibilities as requiring institutional policies and often cross-departmental collaboration.
Presenters recommended that libraries seeking to support clinical research consult institutional privacy officers and legal counsel when establishing workflows and that they prioritize secure tools and clear agreements when work involves protected health information.
