Video Module: Patient data – who owns it, and for what purpose

This video module was created in September 2018 for the Biden Cancer Summit.

Ownership of your data remains one of the most important, yet confusing areas to navigate as a patient. This module seeks to clarify patients’ rights, privacy rules, and why understanding data ownership is so critical.


Dr. Robert Miller (CancerLinQ)
Lucia Savage, Esq. (Omada Health)
Dr. Jane Perlmutter (Cancer Advocate)

Discussion Points

  • Do you understand your rights to data?
  • How can we empower and/or educate patients about data ownership?
  • How can patients use their own data to be the drivers of their healthcare?
  • What are the biggest issues when it comes to patient data and privacy?

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