The 131st Annual Meeting (November 15-19, 2003) of APHA

Abstract #73403

Sarah Putney, JD, Director, Human Subjects Committee, Harvard University, Harvard School of Public Health, 1613 Tremont Street, Boston, MA 02115, 617-384-5482, sputney@hsph.harvard.edu

Under the new Privacy Rule of HIPAA (the Health Information Portability and Accountability Act), access to individually linkable health data will never be the same again. Since the final compliance deadline of April 14, 2003, what are detectable and predictable impacts of HIPAA on research and initiatives focused on links between social justice and public health? This session will describe how HIPAA has altered the landscape for researchers, from study design and budget planning, to interdependence on contract administrators and IRBs, to other forms of managing research including negotiating access to data, revising informed consent processes, to data collection, security, and sharing. Jurisdiction and the six major pathways to access “PHI” (protected health information) will be explained. Other effects of HIPAA on social justice and public health in America also deserve contemplation. These include newly created rights evincing greater respect for individuals’ autonomy and privacy, increasing control over the use of personal health information, and demanding accountability from the healthcare industry. Social position (e.g., class, race/ethnicity, gender, sexuality) will affect how people experience the burdens and benefits of HIPAA. Will HIPAA discourage research participation, despite the theory that the new, higher “floor” of confidentiality will foster public trust in research and make Americans more willing to participate? Informed by the lessons of the first six months of the HIPAA era, this session will attempt to trace how new research realities are emerging.

Learning Objectives:

At the conclusion of the session, the participant (learner) in this session will be able to:
• Articulate the main objectives of HIPAA;
• Provide examples of how HIPAA is changing the conduct of public health research; and
• Discuss implications of HIPAA for research involving issues of social justice and public health

Keywords: Public Health, Privacy

Presenting author's disclosure statement:
I do not have any significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.