Session: Social Justice & Public Health: Data Needs and Data Privacy
3313.0: Monday, November 17, 2003: 2:30 PM-4:00 PM
Social Justice & Public Health: Data Needs and Data Privacy
Based on discussion at the Spirit of 1848 business meeting at the 2002 APHA annual meeting, we have decided that the Politics of Public Health Data session will be focused on issues surrounding both data needs and data privacy as they relate to social justice and public health in the United States. Following the format we used at the 2002 meeting, the session accordingly will include three presentations (20 minutes each) followed by a brief commentary by a discussant. One talk will address issues pertaining to data needs of grassroots organizations organizing around issues of social justice & public health. The focus will be on what these needs are, innovative ways that groups are meeting these needs, and how these needs can be communicated to and acted upon by public health researchers, agencies, and sponsors. Another talk will address the data privacy issues relevant to the "Privacy Rule" regarding "individually identifiable health information," required by the Health Insurance Portability and Accountability Act of 1996 (HIPAA). This regulation took effect in April 2001 and compliance is mandated by April 2003. At issue is how these regulations will affect researchers, especially regarding data access and sharing, and their likely impact on research and initiatives focused on links between social justice & public health. The third talk will provide an update on the Racial Privacy Initiative ( ), scheduled to appear on the California ballot in March 2004. This initiative would ban collection of racial/ethnic data by government agencies, albeit possibly with exemptions for some kinds of medical research and law enforcement activities, and could have tremendous implications for social justice & public health. The discussant will be asked to reflect on issues of data needs & data privacy in relation to work on social justice & public health. Presentations will be solicited. No unsolicited abstracts will be reviewed. This session will be in the Monday afternoon 2:30 pm to 4:00 pm APHA time slot.
Learning Objectives: Refer to the individual abstracts for learning objectives
See individual abstracts for presenting author's disclosure statement and author's information.
Organizer(s):Kristen S. Marchi, MPH
Catherine Cubbin, PhD
2:30 PMSocial justice and public health: Data needs and data privacy
Catherine Cubbin, PhD, Kristen S. Marchi, MPH
2:40 PMWhat HIPAA Means to Public Health Research
Sarah Putney, JD
3:00 PMEliminating race, ethnicity and national origin information from public health research and programs: California's ballot initiative
Carmen Nevarez, MD, MPH
3:20 PMGrassroots organizing for social justice & public health: Data needs & strategies to address them
Makani Themba-Nixon
3:40 PMDiscussant
Nancy Krieger, PhD
Organized by:Spirit of 1848 Caucus
Endorsed by:Asian Pacific Islander Caucus of APHA; Black Caucus of Health Workers; Caucus on Refugee and Immigrant Health; Community Health Planning and Policy Development; Epidemiology; Health Equity and Public Hospitals Caucus; Health Law Forum; Labor Caucus; Lesbian, Gay, Bisexual, and Transgender Caucus of Public Health Workers; Maternal and Child Health; Socialist Caucus; Statistics
CE Credits:CME, Health Education (CHES), Nursing, Pharmacy

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