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HIV-related stigma and discrimination are alive and well. Despite civil rights laws and protections related to the disclosure of protected health information through the HIPAA privacy rule, people with HIV often worry about the disclosure of their HIV status, and when inappropriate disclosures happen, it can cause real and serious harm. At the same time, exciting work is being done in states across the country to integrate HIV surveillance data with clinical data to increase engagement in care. Further, research is taking place at UCSD and elsewhere using the unique HIV sequence of individual people with HIV to map transmission within a community. This has the potential to help us to better target interventions to interrupt transmission and reduce the number of new infections.
This talk gave researchers and clinicians a new way of thinking about the competing impulses to protect privacy and limit disclosure of information with sharing and using information to innovate. It examined existing privacy protections, explored how changes in CDC testing and counseling recommendations have shifted thinking about the balance between privacy protection and facilitating access to data, and examined recent efforts by states, health care providers, and consumers to integrate surveillance and care data to improve engagement in care.
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Jeffrey S. Crowley, MPH is a Distinguished Scholar and Program Director of the National HIV/AIDS Initiative at the O’Neill Institute for National and Global Health Law at Georgetown Law. From 2009 to 2011, he served as the Director of the White House Office of National AIDS Policy and Senior Advisor on Disability Policy for President Barack Obama. As the President’s chief HIV/AIDS advisor, Mr. Crowley led the development of the first comprehensive National HIV/AIDS Strategy for the United States. During his tenure at the White House, Mr. Crowley also made major contributions to the development and implementation of the Affordable Care Act, comprehensive health care reform legislation enacted in 2010.