Overview of Use Cases, Thematic Areas, and Scenarios

Use Case 1: Combine Data for PCOR

Combining Independently Managed Data for PCOR

Combining Clinical and Claims Data

Secondary Analysis of Administrative Data on Substance Use Treatment CER

Combine Claims and Birth Records

Use Case 2: Consent Management

Research and Age-Related Consent

Considerations Related to Consent and Transitions from Minor to Adult

Research Data Use Scenarios on Special Populations and Protection Status

Obtaining Consent from Incarcerated, HIV-Positive Research Participants

Consenting Individuals with Impaired Decision-Making Capacity

Use Case 3: Use of Sensitive Data

Use Behavioral Health Data for PCOR

Combining Mental Health Data with Physical Health Data

Precision Medicine

Consent to Disclose Genomic Data that Affects Family Members

Genomic Testing and Disclosure to Minors

Use of Genetic Bio-Markers for PCOR

Individual and Population-Level Research Related to Sub-Populations

Privacy Concerns for American Indian/Alaska Native Individuals and/or Populations

Use Case 4:  Identification and Re-Identification of PCOR Data

Cumulative Re-Identification Risk

Reidentification Risk from the Mosaic Effect 

Multi-Site Identity Linking

Creating a Multi-Institutional Unique Identifier for Research

Use Case 5: Use Patient-Generated Health Data for PCOR

Patient-Generated Health Data

Use of Sensor Data

Creating a Registry that Includes Patient Reported Outcomes

Use a Registry that Includes Patient Reported Outcomes for PCOR