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.)