Lessons from reimagining HIV prevention services in New York City
This article was written by Katrina Estacio, who contacted us to share how she was able to apply the x-curve in her own practice after speaking to DRIFTers during our consultation hours.
What if we could reimagine how HIV prevention services are delivered to New Yorkers? This was the foundational question that inspired us to challenge the typical top-down approach of program development. Instead of developing a program for New Yorkers, what if we developed it with them? Thus began the idea of co-designing HIV prevention services with the community who stand to benefit most from it.
It wasn’t a question of why we should do this. This was already years in the making, backed by numerous conversations with community members, people who have the lived experience, including staff from organizations providing HIV prevention services. The community advocated for more client-centered services, ones that addressed clients’ health and social needs and provided a safe, stigma-free environment where they can access these services. But more “how can we possibly approach a collaboration at this scale?”
One could say that it was a fortuitous mix of circumstances brought about the right combination of timing, funding and people. We started these conversations just before 2020, then COVID hit, and public health, at that time, started a shift in mindset, of exploring different ways of delivering services. A CDC-funded implementation science grant also allowed for an opportunity for a research partnership between Hunter College (City University of New York) and the New York City Health Department, HIV Prevention Program which would not only evaluate the health outcomes of the program, but also the “process” behind it. It documented the transformation of NYC’s HIV prevention services in real time to capture the process, fidelity, and barriers/facilitators of implementation as they unfolded. And lastly, the team behind this was ambitious enough to challenge the existing infrastructure, and demanded change at a scale that was never attempted before.
Since 2016, HIV prevention services in New York City, at least those funded by the New York City Health Department were delivered through a collaborative network of testing, community-based organizations and clinics providing PrEP (pre-exposure prophylaxis) care. At that time, the FDA had just approved PrEP, a pill, which if taken every day, can prevent HIV acquisition.
New York City’s HIV Prevention Program then leveraged this as an opportunity to increase access and availability of HIV prevention services, by expanding what was offered to New Yorkers and who it was offered to. This program was slated to run for 5 years. Towards the end of the program period, a new funding cycle emerged in order to sustain these already funded services and possibly fund new ones. During this period, program planning took into account lessons learned from previous implementation to inform future programming.
The community needed to be at the center of how the services were re-imagined. This marked a shift in how quality was defined. What does quality HIV prevention really mean for the communities who would most benefit from it? Through co-design and deep collaboration with community advisory boards, quality indicators, measures and implementation strategies were co-developed.
Co-design and a participatory approach were the guiding principles in planning and developing the re-imagined program. This included stakeholders from the health department who were involved in program planning and decision-making, and those who would ultimately support, monitor and evaluate the program. More importantly, it also included funded organizations who would eventually deliver HIV prevention services to the community. By adopting this approach, it highlighted our underlying belief that through co-design and truly collaborative and participatory process, we would be setting ourselves up for successful program implementation.
We did, to a certain extent. When you look at how the program was developed and implemented, a lot of the actions were participatory and/or collaborative (see Figure 1). But the overall program itself fell short of expectations. It was received with a lot of resistance. People bought into the idea of it, but the actual work of implementing something at this scale, with different levels of change needed, was harder than anyone had anticipated. People started defaulting to the old ways, the status quo of performing their roles and work. Resistance was expected, as is the case with any kind of change. But what made this situation particularly difficult? Why did this happen? What did we miss?
Figure 1.
An explanation, at least one that can be seen as a plausible reason to help us understand what was going on, was provided by using the X-Curve as an analysis tool. The X-Curve was used to characterize where implementation fell short. We looked at over a hundred critical actions completed across the 4 phases of implementation[1] (exploration, preparation, implementation and sustainment), and close to 90% of the actions engaged in creating a new way of working.
Participation drove patterns of build-up. However, only 20% of actions were dedicated to dismantling the old system. There was no intentional phase-out of the old systems. This resulted in a co-existence of new and old, a persistence of the old system alongside the new. And in such situations, one can arguably understand why people would default to the old system. It was what felt familiar, the infrastructure within which it existed, and the knowledge and skills people had built around it were already adapted to it. (see Figure 2)
[1] Aarons, G. A., Hurlburt, M., & Horwitz, S. M. (2011). Advancing a conceptual model of evidence-based practice implementation in public service sectors. Administration and Policy in Mental Health and Mental Health Services Research, 38(1), 4–23. https://doi.org/10.1007/s10488-010-0327-7
Figure 2.
The imbalance between build-up vs. breakdown patterns was the missed opportunity. One may see this as supporting evidence for de-implementation research, a growing recognition that stopping old practices requires its own deliberate strategy. And this sits well within how we must approach development of public health programs within health systems, because public health programs have to evolve – to address changing demographics, more nuanced epidemiology and the continuous innovation happening as a result of new data, tools and interventions.
We have to challenge ourselves to do better because we carry that responsibility as public health practitioners. This analysis served as a diagnostic tool, not just for this program, but for how we approach transformative change in public health more broadly: building new practices is necessary but not sufficient, regardless of how participatory it is. We must be equally deliberate about what we need to dismantle. This blind spot isn’t unique to our setting as health systems are often better equipped to build than to eliminate what no longer serves them. As we move forward with this work, co-design remains essential, but it must extend to deliberately dismantling the infrastructure and processes that no longer benefit the community the health system serves.
Author notes:
- Results are preliminary, based on analysis of documented critical actions. These preliminary patterns nonetheless reveal important trends and actionable insights for health systems transformation.
- Figures are screenshots from our research poster presented at the International Forum on Quality and Safety in Healthcare in Oslo back in March 2026 (sent a separate file). This will be updated with the final results, and then adapted to a format that is more appropriate for this article.
