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D - RESPND-MI: Organizing
An overview of our approach to organizing RESPND-MI to prepare for the MPX NYC study.
D.1 Guiding Principles
The MPX NYC (RESPND-MI) study was built on a set of principles that shaped every decision. At its core was a belief in community power—that queer and trans people already hold the expertise to understand and respond to their own health challenges. Rather than treating participants as data sources, the study recognized them as co-investigators and decision-makers, shaping research design, communication, and interpretation.
The culture emphasized making things quickly and collectively. Instead of waiting for perfection, teams prioritized timely outputs—policy briefs, safer-sex guides, vaccination finders, and educational op-eds that met community needs in real time.
The project drew from Global South traditions of health activism, particularly HIV activism and community-led monitoring. Data were collected to serve the community—not institutions. Transparency and accountability anchored this commitment.
Participation was designed to bring joy in learning and problem-solving, not obligation or burnout. We intentionally built an over-supply of volunteers and investigators, knowing people would cycle in and out with competing work demands. Tasks were small and widely distributed, enabling many people to do small things and letting others pick up unfinished work without taking on too much. We approached abundance as a form of resilience.
We built as we flew—raising money as the project unfolded, but not waiting for funding to begin the work or set ambitious targets.
Leadership was distributed, not hierarchical. Functional leads coordinated areas like communications, web development, translation, and questionnaire development while staying accountable to the collective. The Principal Investigator grounded the project’s vision; the Research Coordinator kept its rhythm. This structure prevented bottlenecks and maintained momentum.
D.2 Structures
We formed three groups to prepare the study: a technical group, an administration group, and an external engagement group.
The technical group prepared the questionnaire (Pedro Carneiro, Nguyen Tran, Robert Pitts, Keletso Makofane); developed the survey instrument (Seema Kara, Keletso Makofane, Sudipta Saha); managed translation into Spanish (Cody Nolan); and coordinated testing of the survey instrument (Keletso Makofane).
The administration group wrote IRB applications and funding proposals (Keletso Makofane, Sudipta Saha); developed the fundraising strategy (Keletso Makofane, Ken Nadolski); managed the marketing-agency contract (Nick Diamond, Christian Urrutia); completed financial and narrative grant reporting (Keletso Makofane, Christian Urrutia); and managed timelines and dependencies across all work streams (Keletso Makofane, Sudipta Saha).
The external engagement group invited stakeholders to the initial Community Forum (Grant Roth, Chris Wyman, Keletso Makofane); facilitated and participated in the CF (Keletso Makofane, Joe Osmundson, Elle Lett, Jennifer McQueen, Martez Smith); managed a project newsletter (Nick Diamond); coordinated the marketing campaign (Nick Diamond); and conducted study-related workshops for members of the ballroom community in Harlem (Martez Smith, Jennifer McQueen, Keletso Makofane).
D.3 Consultation
At the start, we prioritized establishing whether there was a need for the study by consulting with stakeholders working in LGBTQ+ health in New York City. The LGBTQ+ Community Forum (CF) began as a consultation call with these stakeholders. We held the initial call in May 2022 and concluded there was a clear need for the study—and established an open, standing call to continue coordination.
The CF became the heart of the collective work, linking activists, health professionals, and researchers. More than eighty participants shaped design decisions in real time—broadening inclusion to trans participants, refining language to avoid stigma, and expanding translation into Spanish. The CF blurred the line between community organizing and epidemiologic investigation. Meetings opened with updates on publicly available epidemiology (initially case counts and etiologic studies) and invited participants to share insights from clinical and program experience.
Together, the Community Forum and Investigator Group formed a responsive ecosystem. The Forum served as an open sphere for collective decision-making; the Investigator Group translated input into operations. This structure enabled speed without sacrificing inclusiveness or rigor.
D.4 Dissemination
Dissemination was central to the organizing model. Through a coordinated press strategy, our advocacy and research reached audiences across major media—The New York Times, The Atlantic, TIME, PBS NewsHour, CBS News, NPR, The Washington Post, and STAT—as well as queer media such as The Body and POZ Magazine. International coverage in PLOS Global Public Health, Out, and The Sunday Times extended the reach.
These stories shaped national conversations on health equity, stigma, and queer-led public health—positioning RESPND-MI as a trusted voice bridging science, activism, and policy in real time during the mpox emergency.
Partnerships spanned scales. Locally, we collaborated with the NYC Department of Health, community organizations, and ballroom networks. Nationally, we supported efforts like The Choice Agenda and AVAC’s mpox and HIV activism panels. Internationally, we presented at the WHO and International AIDS Society as a model for rapid, community-led response.
D.5 Reflection
RESPND-MI showed that community organizing can function as public-health infrastructure. Its guiding principles created purpose; its collaborative practices generated action; and its structures sustained impact under crisis.
It modeled a form of community-led epidemiologic inquiry—one that not only produced data but transformed the conditions under which data are made, shared, and acted upon.