Primary Submission Category: Health equity
DISCO (Developing Information-sharing Standards through Community): Using a Deliberative Democracy Process to Elicit Community Members’ Input on Data-Sharing Practices
Authors: Connor Emmert, Meghan Peterson, Rebecca Zimba, Honoria Guarino, Sarah Kulkarni, Mary Irvine, Denis Nash,
Presenting Author: Connor Emmert*
Background: DISCO was a deliberative democracy project spearheaded by the NYC Department of Health to develop transparent client-driven guidelines for future implementation of Data to Suppression (D2S). D2S is a surveillance-based HIV reporting initiative flagging virally unsuppressed clients for follow-up by their Ryan White HIV/AIDS Program housing and behavioral health service providers. Deliberative democracy is a community engagement framework for involving citizens in developing policy on ethically complex problems. In this DISCO case study, we outline steps in the planning of a robust deliberative democracy process.
Methods: Working closely with community liaisons and service providers, we recruited clients who had been or could be directly affected by D2S. Facilitator preparation included training on cultural humility and health equity. Sessions were held in an accessible building well served by public transit. We held informational sessions on D2S, HIV surveillance, and state law and regulations governing person-level HIV data sharing by health departments. All activities and materials were fully bilingual, including live translation/interpretation of sessions. Participants’ feedback was collected as part of discussions throughout the sessions and in questionnaires at the end of each session.
Results: Session One in February 2024 engaged 37 clients in policy statement development. Session Two, held in March 2024 with 32 of those 37 clients, included deliberation and voting on the draft policy statements. Over 94% and 100% of participants in Sessions One and Two, respectively, either Agreed or Strongly Agreed (on a 5-point Likert scale) that the sessions were a good use of their time and that their recommendations would help to guide policy.
Conclusion: DISCO’s deliberative democracy framework led to high community engagement, discussion, and consensus-building. Participants felt their voices were heard and their feedback would have an impact on policy.