BD4P Core Thematic Areas and Priority Topics

1. Deriving meaning from health data

  • Overview of big data – what are data and why is it necessary? 
  • Types of data/data sources 
  • Data use and integration/interoperability issues
  • Understanding causation vs. association

2. Big data approaches vs. traditional research approaches

  • New methods (mobile devices, natural history data, etc.) vs. old methods (clinical trials, etc.)
  • Ubiquity of data

3. Understanding policy and privacy aspects

  • Data access (for and by patients, for researchers, providers, etc.) and ownership
  • Ethical issues (privacy and consent)
  • Legal issues (i.e. ACA, HIPAA, GINA)

4. The role of patient advocates in driving patient-centered research

  • Defining/Identifying roles for patient advocates (providing input on committees, testing tools, educating other advocates, contributing data, etc.)