Speaker Profile

JD, MPH, LLM, Chief Regulatory Officer, Ciitizen

Deven McGraw is the Chief Regulatory Officer for Ciitizen. Prior to joining Ciitizen, she directed U.S. health privacy and security policy through her roles as Deputy Director for Health Information Privacy at the HHS Office for Civil Rights (the office that oversees HIPAA policy and enforcement) and Chief Privacy Officer (Acting) of the Office of the National Coordinator for Health IT. Deven also advised PCORNet (the Patient Centered Outcomes Research Network), as well as the federal All of Us Research Initiative, on HIPAA and patient-donated data research initiatives.


Regulatory Implications and A Practical Understanding of Patient Data Access and Sharing
HIPAA gives patients a right to copies of their health information, including a right to have that data forwarded anywhere to another treatment provider, a caregiver, or a research initiative. This right is reinforced by financial incentives (such as “meaningful use,” MACRA, and other outcomes or value-based payment initiatives) that reward the sharing of data with patients. We’ll clarify patient access rights as well as security and privacy, looking specifically at how physicians, researchers, and institutions can increase patient engagement while benefiting from data donations in return.

Session Abstract – PMWC 2018 Silicon Valley

Session Synopsis: It’s fine to talk about cutting edge immunotherapy, biomarkers for early detection of disease, and the implications of ‘big data.’ But the dirty little secret surrounding big-data in healthcare is…we’ve got to think much smaller. Small data, N-of-1, the individual. Collected patient by patient, seven billion times over. Combining the power of people – and their health data – with developments in computational biology and technology for the knock-out punch on cancer. This session addresses patient data access, self-reported data, and regulatory solutions serving both human and AI/ML computational needs. We’ll outline a different way of thinking about the future – an attack on cancer that empowers people, patients and professionals.

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