REMOVING HUMAN RIGHTS BARRIERS TO HIV PREVENTION, CARE AND TREATMENT: USING DATA TO DRIVE ACTION GLOBALLY ASSESSING HUMAN RIGHTS IN HIV RESPONSES: CHALLENGES AND OPPORTUNITIES Sofia Gruskin, J.D., MIA Director, Program on Global Health & Human Rights Institute for Global Health Professor, Department of Preventive Medicine and Gould School of Law University of Southern California Tuesday, July 19 th, 2016

Globalhealth.usc.edu/ghhr Sofia Gruskin, J.D., MIA APPROACHES TO HUMAN RIGHTS IN HIV RESPONSES A broad concern with justice – “a rhetorical approach” Naming and shaming – “a violations approach” Preventing and addressing human rights violations through engagement with the law– “ a legal approach” Using rights to improve the delivery of HIV-related services – “an operational approach”  Requires clarity given:  Implications for programming, data collection, evaluation, disaggregation, accountability, legal claims… and for how we understand one another!

Globalhealth.usc.edu/ghhr Sofia Gruskin, J.D., MIA WHAT HUMAN RIGHTS ARE WE TALKING ABOUT ?  The right to life, survival, and development  The right to equality and non- discrimination  The right to health (availability, accessibility, acceptability and quality of services delivered)  The right to share in scientific advancement and its benefits  The right to bodily integrity and security of the person  The right to an identity  The right to privacy/confidentiality  The right to seek, receive and impart information  The right to freedom of opinion and expression  The right to travel  The right to food  The right to housing  The right to social security  The right to work  The right to be free from torture  The right to association  The right to marry and to found a family  The right to equal access to education  The right to an adequate standard of living  The right to social security, assistance and welfare  The right to freedom of association  The right to freedom of movement  The right to seek and enjoy asylum  … and Accountability

Globalhealth.usc.edu/ghhr Sofia Gruskin, J.D., MIA A COMMITMENT TO USING HUMAN RIGHTS TO ADDRESS BARRIERS TO HIV PREVENTION, CARE AND TREATMENT  Addressing inequalities in the delivery, uptake and use of HIV- related services, and the laws and policies under which programs operate  Ensuring that plans, policies and programs are anchored in a system of rights and corresponding obligations in line with international law:  Non-discrimination  Availability, accessibility, acceptability, quality of health services  Information and education  Informed decision making  Privacy and confidentiality  Participation and accountability  Providing opportunities for individuals (especially the most marginalized) to participate in policy and program formulation and implementation  Ensuring mechanisms that support accountability, including routine monitoring, evaluation as well as means of redress for rights violations

(PRESENTATION NAME) Sofia Gruskin, J.D., MIA USING HUMAN RIGHTS IN ASSESSING HIV PROGRAMMING HUMAN RIGHTS PRINCIPLES Non-discrimination; availability, accessibility, acceptability, quality of health services; information and education; informed decision making; privacy and confidentiality; participation; accountability Gruskin, S., Waller, E., Safreed-Harmon, K., Ezer, T., Cohen, J., Gathumbi, A. & Kameri-Mbote, P. (2015). Integrating human rights in program evaluation: Lessons from law and health programs in Kenya. In B. Rosenstein & H. Desivilya Syna (Eds.), Evaluation and social justice in complex sociopolitical contexts. New Directions for Evaluation, 146, 57–69

Globalhealth.usc.edu/ghhr Sofia Gruskin, J.D., MIA WHY INDICATORS? WHAT INDICATORS TO USE?  Potential benefits of attention to rights in indicator development and use:  Generates focus on the humans that need services  Generates operational attention to rights in how services are delivered  Can measure performance of HIV- related services and outcomes with attention to human rights  Generates the evidence base of how rights matter for delivery, uptake and use of HIV-related services  Can drive programming  What sort of indicators are needed?  Quantitative indicators exist but are largely insufficient  Qualitative indicators exist but are not widely used  Policy indicators exist but are not widely used and only rarely linked to HIV programming

Globalhealth.usc.edu/ghhr Sofia Gruskin, J.D., MIA DETERMINING IF AN INDICATOR LEND ITSELF TO ASSESSING RIGHTS CONCERNS  Determine how data are collected and what the indicator is trying to measure  Determine which human rights principles or standards are potentially addressed by the indicator  Determine if the link to human rights is explicit and/or implicit  Determine if the indicator has a focus on specific population and/or inequalities  Determine if the indicator reflects community and/or user perspectives  Determine if the indicator lends itself to disaggregation and investigation for potential accordance with non- discrimination law  Adapted from Gruskin, Ferguson, Kumar, Khosla, “An Instrumental Methodology for Strengthening Human Rights Aspects of Monitoring, Evaluation and Accountability in Public Health” (under review 2016).

Globalhealth.usc.edu/ghhr Sofia Gruskin, J.D., MIA  What counts as data  Growing attention to assessing rights-based interventions  Growing attention to assessing all interventions from a rights perspective  And finally … what will it take for for broader M&E systems to take rights seriously and to truly be rights-based? 8 CHALLENGES AND OPPORTUNITIES

Globalhealth.usc.edu/ghhr Sofia Gruskin, J.D., MIA THANK YOU! Globalhealth.usc.edu/ghhr 9