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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.)