Developing Informed-consent Standards through a COmmunity-driven deliberative democracy process (DISCO) for Data to Suppression (D2S)

Graduate School Of Public Health And Health Policy, New York NY

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Abstract

ABSTRACT We will use a community-based, participatory framework to create ethical guidelines for HIV information sharing. The proposed project builds on the “Data to Suppression” (D2S) approach in the parent grant. D2S is a capacity building initiative, of which a central component is surveillance-based, viral suppression reporting on clients in housing and behavioral health programs. However, the D2S project was developed without input from clients who are served by the initiative. Many people with HIV (PWH) may not be aware that their HIV laboratory test results are being shared, with whom their data are being shared, or what regulations exist to govern information sharing between public health departments and health service providers. Developing a more client-centered data sharing process can foster better public trust and engagement with this type of public health initiative. It can also serve as a model for other jurisdictions to implement similar processes. In order to develop an ethical consent process for data sharing, it is essential to obtain community feedback on policies governing how data may be shared and used. In this supplemental project, we will hold a two-day, “deliberative democracy” session among 40 clients who receive Ryan White Part A (RWPA) services to identify community values and priorities around HIV data sharing for public health interventions. We will develop recommendations for an informed consent and data sharing protocol for the D2S initiative. During the first session, we will convene information sessions on current New York City Department of Health and Mental Hygiene data sharing policies and host small group deliberation sessions where clients can propose policies for ethical data sharing. During the second session, we will vote to ratify proposals and a consent process for data sharing. The session will be evaluated using pre- and post- study questionnaires, qualitative analysis of small group sessions, and through ratification of finalized recommendations and policies for HIV-related information sharing. The work in this supplement will challenge top-down approaches to health intervention planning and strive toward a public health framework that is truly community-driven.