Ciitizen: When You Control Your Health Data, You Have More Options


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Summary of Presentation

Privacy is not only about protecting data but also empowering patients. Ciitizen relies on HIPAA’s right of access to help patients get medical data more easily. However, data available in portals today is just a drop in the bucket compared to all of the existing patient data that patients have a right to access, including images, pathology reports, genomic and genetic data. Even worse, 50% to 60% of medical records offices are out of compliance with one or more HIPAA right of access regulations. 

 

Faster data access by patients can be achieved by making the “US Core Data for Interoperability” (USCD1) available through open, standard APIs in provider electronic medical records. These APIs can serve as a data hub – including for patients. They can ultimately provide diverse data including patient demographics, clinical notes, assessments, and other attributes. Once patients have their data, they can use it to seek the best possible treatments and to power research. However, for patients to trust consumer tools with their health data requires strong commitments to protecting patient privacy. 

 

About The Presenter

A picture of Deven McGraw, General Counsel and Chief Regulatory Officer for CiitizenDeven McGraw is General Counsel and Chief Regulatory Officer for Ciitizen, a consumer health technology start-up.  Previously she directed U.S. health privacy and security as Deputy Director, Health Information Privacy at the HHS Office for Civil Rights and Chief Privacy Officer (Acting) of the Office of the National Coordinator for Health IT.  Widely recognized for her expertise in health privacy, she directed the Health Privacy Project at the Center for Democracy & Technology for six years and led the privacy and security policy work for the HITECH Health IT Policy Committee.  She also served as the Chief Operating Officer of the National Partnership for Women and Families. She advised health industry clients on HIPAA compliance and data governance while a partner at Manatt, Phelps & Phillips, LLP.  Deven graduated magna cum laude from Georgetown University Law Center. She has a Masters of Public Health from Johns Hopkins University.