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.
Patients and their caregivers - particularly in the case of patients who with serious or life-threatening illnesses - are tired of waiting on the sidelines for research to come to them (for example, to find them for clinical trials or to address questions of importance to patients). Increasingly patients are seizing greater opportunities to have access to their health information (including genomic/genetic data and clinical data from electronic medical records, including images) to contribute this data directly to research initiatives that they trust and that are addressing questions of importance to them (either because they could benefit individually or the research is focused on questions the patient believes are important). This panel will showcase existing initiatives that are putting patients (and patient groups) more in the driver’s seat with respect to precision medicine.