Bloomrosen, Meryl; Detmer, Don

Table 1

Selection from Taxonomy on Dimensions of Data Use

Uses of Data	Factors Influencing Authorization for Use of Healthcare Data
A. Protect and enhance public health Enable and support biosurveillance Monitor and report vital statistics Monitor and report biometric demographics (e.g. weight, height, blood pressure, normal lab values) Identify, monitor, and report health and illness trends Identify, monitor, and report infectious diseases (e.g. culture, serology, DNA/RNA probe results) Export data to health registries Cancer or rare disease registries Drug and device registries Report toxic exposures (e.g. smoking, Agent Orange) B. Develop security and confidentiality algorithms and test de-identification routines C. Conduct research D. Create and maintain terminology and representation formalisms E. Develop and apply decision support for health care providers Develop and test the efficacy of decision support algorithms Develop order sets, rules, and alert F. Support quality of patient care Manage quality and outcomes Manage staffing and resources Develop and assess quality indicators Support quality reporting (e.g. HEDIS) G. Improve patient safety Conduct pharmacovigilance (post market drug and device surveillance) Detect and analyze adverse and sentinel events Support risk profiling Monitor and survey to prevent patient adverse events H. Manage personal health Provide patient-specific feedback and assessments of progress toward health goals Maintain personal health records Provide links to knowledge resources based on personal health information I. Educate and credential healthcare providers and assess training activities (e.g. types and outcomes of procedures) J. Analyze and Manage Finances Conduct automated billing, claims processing Analyze activity-based charge capture, cost accounting Develop predictive models of costs and accounting K. Detect fraud and illicit activity Detect illegal and inappropriate activity (e.g., Medicare upcoding) Report drug screen results to detect illegal drug use L. Identify markets and promote sales Conduct market research Target marketing to physicians Target marketing to patients and families	1. Requirements Imposed on Use of Healthcare Data A. Identification Status Patient-identifiable data De-identified data (HIPAA definition) Anonymized data No linkage possible (alteration of PHI, precluding linkage) Relinkable data Linked with protected key (trusted third party) B. Consent provided at the time of data collection No consent by the individual Consent by the individual Broad and unspecified Time-limited consent Consented for partial, source specific use (e.g., no psychiatric data) Consented for the particular type of use C. Demographic representation Age Race Gender SES Insurance status D. Focus on a vulnerable population (e.g. prisoners, pregnant women, undocumented immigrants) E. Original collector and aggregator of the data Government Health Plan Other private entity F. Proposed user of the data Government agency Academic institution Private, not-for-profit entity Private, for-profit entity G. Funding source for use Government agency Academic institution Private, not-for-profit entity Private, for-profit entity H. Financial compensation to data collector or data steward for providing data to a second party No compensation Compensation I. Beneficiary of use Society Researcher Academic institution/medical center Private, for-profit entity (e.g., financial gain) J. Disclosure of use Not disclosed publicly Publicly disclosed Disclosure of results only Disclosure of research methods utilized Disclosure of analytic principles that guide data use	K. Required level of consent and authorization IRB evaluation not required IRB evaluation required No consent by the individual required Consent by the individual required L. Compensation of patients No compensation required Compensation of individual patients required 2. Existing and potential sources of data for use A. Public Use Datasets i) Medicare ii) Medicaid iii) CDC surveys (some Primary data use, e.g. NHANES) B. Private Datasets Open-source data Commercial use datasets (at patient level) Pharmacy benefit/claims manager Provider databases Individual providers Aggregated data from provider consortia Consortium databases caBIG CTSA recipients University Health Systems Consortium Aggregated clinical repositories hosted by HIT vendors Personal health records, including patient-entered data Health Information Exchanges (RHIOs, etc)

Advancing the Framework: Use of Health Data—A Report of a Working Conference of the American Medical Informatics Association

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