How to Engage Underserved Communities for Clinical Research in New York
Summary: New York City is home to some of the most medically underserved and research-avoidant communities in the country — not because people there don't care about health, but because research has rarely shown up for them consistently, honestly, or in a language they speak. Nationally, non-Hispanic white participants still make up roughly three-quarters of clinical trial enrollment while representing a shrinking share of the population, and in a city where nearly half of residents speak a language other than English at home, that gap is not an accident of geography — it's a design flaw in how studies recruit. This post lays out what real engagement looks like when it starts with trust instead of enrollment targets, why the neighborhoods researchers avoid are usually the ones the science needs most, and how Lumovance builds recruitment infrastructure inside those communities rather than around them.
Why Is Trust the Real Barrier to Research Access?
Most recruitment shortfalls in underserved neighborhoods don't come down to logistics — they come down to history. Communities that have been studied without being told the results, or approached only when a study needed bodies and never again afterward, learn to treat a research team the same way they'd treat any stranger asking for something and offering nothing lasting in return. The National Institutes of Health's own community engagement guidance is built around this reality: it frames real engagement as open dialogue, transparency, and a demonstrated commitment to improving community health, not a one-time recruitment push dressed up as partnership.¹ Trust, in other words, isn't a soft add-on to a recruitment plan — it's the actual mechanism that determines whether a plan works.
That distinction matters because it changes the timeline. Relationships have to exist before a study needs them, which means outreach can't start when enrollment opens; it has to start months or years earlier, through consistent, low-stakes presence in the community — at health fairs, resource days, and the same community meetings a study will one day need signal-boosted. Research teams that skip this step are, in effect, asking for trust they haven't earned yet, and communities that have been burned before are very good at recognizing the difference.
Who Are New York's Underserved Research Communities?
New York City's diversity is exactly what makes broad, English-only, clinic-based recruitment strategies fail here. Nearly half of New Yorkers — about 3.84 million people — speak a language other than English at home, and roughly 1.79 million residents citywide are considered limited English proficient, meaning a consent form or a flyer in English alone simply doesn't reach them.² Foreign-born residents make up over a third of the city's population, adding immigration status, documentation fears, and unfamiliarity with the U.S. research system to the list of reasons someone might decline to participate even when a study could genuinely help them.³
Layer health equity data on top of language and immigration realities and the picture sharpens further. Black women in New York City are four times more likely than white women to die from pregnancy-associated causes, a disparity the city's own health department has named a top priority to close.⁴ Nationally, the pattern repeats across disease areas: an FDA analysis of drug trials found that just 8% of participants were Black and 11% were Hispanic, even though those groups make up a much larger share of the U.S. population and, in some disease areas, carry a disproportionate share of the disease burden itself.⁵ In cancer research specifically, Black and Hispanic patients each account for only 3–6% of trial participants despite representing 15% and 13% of people living with cancer, respectively.⁶ These aren't gaps that close on their own — they close when recruitment strategy is built around the communities carrying the disease, not around whichever population is easiest to reach.
Why Do Researchers Avoid the Neighborhoods That Need Them Most?
There's an uncomfortable pattern in research recruitment: the neighborhoods with the highest disease burden, the least existing research infrastructure, and the greatest need for representation are often the same neighborhoods research teams are most hesitant to enter. Sometimes it's a resourcing problem — academic medical centers build recruitment pipelines around their own patient panels, which skew toward whoever already has consistent access to that institution. Sometimes it's a comfort problem — staff feel more confident tabling at a university health fair than knocking on doors in a public housing complex or setting up in a community center that isn't affiliated with a hospital system at all. Either way, the result is the same: the populations most affected by a condition end up least represented in the research meant to treat it.
Meaningful engagement means going to where people already are, not asking them to come to you. That looks like partnering with the barbershop, the church basement, the tenant association meeting, the food pantry line, and the community center that's been serving a neighborhood for decades — places with existing trust infrastructure that a study can borrow, if it shows up with humility instead of a clipboard and a deadline. It also means staffing outreach with people who reflect the community being recruited, speak its languages fluently rather than through a translation app, and can answer questions about a study in plain terms without falling back on IRB language that alienates more than it informs.
What Does Genuine Community Partnership Look Like?
An advisory board that meets once a quarter and gets shown a slide deck is not community partnership — it's a formality. Real partnership gives community organizations actual influence over protocol feasibility, recruitment messaging, and retention support, and treats their input as a design input rather than a courtesy.⁷ That can mean paying community partners for their time and expertise the same way a study pays any other consultant, building in feedback loops so community leaders know how their input changed the study, and committing — before enrollment ever opens — to sharing results back with the community once the study concludes, not just publishing them in a journal few residents will ever read.
This kind of partnership takes longer to set up than a standard recruitment contract, and it costs more up front. But it's also the difference between a study that recruits once and burns a neighborhood's goodwill, and one that becomes the reason that neighborhood says yes to the next study, and the one after that.
How Should Recruitment and Retention Be Redesigned Around Real Barriers?
The barriers that keep people out of studies are rarely about interest in the science — they're about the logistics of daily life. Transportation costs, inflexible work schedules, childcare, the sheer time burden of study visits, and language gaps in consent materials all quietly filter out exactly the participants a diverse study needs most. Addressing them means building support into the recruitment and retention plan from the start: translated materials in the languages a community actually speaks, flexible scheduling that accounts for shift work, transportation stipends or assistance, and plain-language explanations of what participation actually involves, what the risks are, and what privacy protections exist.
Retention deserves the same redesign as recruitment. A participant who was recruited through a trusted community partner but then handed off entirely to a call center for every follow-up visit will drop off at a much higher rate than one who stays connected to the same outreach team and community touchpoints throughout the study. Keeping community partners involved in retention — not just the initial enrollment push — is what turns a one-time "yes" into sustained participation.
How Does Lumovance Put This Into Practice in New York?
This is the model Lumovance was built around. Our team runs bilingual English/Spanish outreach and field recruitment specifically for hard-to-reach and underserved populations, which means our staff are having these conversations in the language a participant is most comfortable in, not translating on the fly. Our anchor past performance, the NIH-funded Worth Path Study conducted through Fairleigh Dickinson University, recruited women ages 18–44 across New York, New Jersey, and Connecticut — a population that skews toward exactly the language, transportation, and trust barriers described above — and did it by building relationships with the communities themselves rather than relying on clinic referral alone.
We maintain standing relationships with community organizations already embedded in the neighborhoods we recruit from — groups like Exodus Transitional Community, the Women's Prison Association, Real Dads Network, Uptown Stories, and Write the World — because those organizations have already done the years of trust-building that a single study can't replicate on its own timeline. Our team's background spans nearly a decade inside underserved-population clinical and research settings, including coordinating genetic and metabolic research for the NIH's All of Us Research Program, which means our field staff understand both the science a study needs and the lived reality of the communities being asked to contribute to it. When a research sponsor is trying to reach the New Yorkers most researchers are hesitant to approach, that combination — bilingual staff, standing community partnerships, and a recruitment model built around trust rather than transactions — is exactly the gap Lumovance is built to close.
What Does Success Look Like Beyond Enrollment Numbers?
A recruitment plan that hits its enrollment target but leaves a community feeling used hasn't actually succeeded — it's just borrowed goodwill it will have to pay back, or won't get to spend again. Real success looks like community partners who had actual influence over protocol decisions, retention rates that hold steady across subgroups rather than dropping off among the hardest-to-reach participants, participant feedback that reflects genuine trust and respect rather than tolerance, and — critically — results that make their way back to the community that made the research possible in the first place.⁸ Measuring engagement this way, rather than by enrollment numbers alone, is what turns a single study into the foundation for the next one.
Underserved communities in New York don't need to be convinced that research matters — many of them already know it does, often because they've lived the disparities the research is trying to explain. What they need is a research relationship that shows up consistently, speaks their language, respects their time, and comes back with something more than a thank-you. Building that relationship is slower and more deliberate than a standard recruitment push, but it's also the only version of community engagement that actually holds up over time — and it's the version Lumovance builds every recruitment plan around.
References
National Institutes of Health, community engagement and public participation guidance. https://www.nih.gov
NYC Department of City Planning, Language Access Plan, based on 2018–2022 American Community Survey data. https://www.nyc.gov/site/civicengagement/about/language-access-plan.page
"Prevalence of breast, cervical, and colorectal cancer screenings among select New York City populations," PMC. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12482105/
NYC Department of Health and Mental Hygiene, Healthy New York City: Goals for 2030. https://www.nyc.gov/site/doh/about/about-doh/healthynyc.page
Masonic Cancer Center, University of Minnesota, "Minority Health Month: Why Diversity is Necessary in Clinical Trials," citing FDA 2020 trial participation data. https://cancer.umn.edu/mncctn/news/minority-health-month-why-diversity-necessary-clinical-trials
American Society of Clinical Oncology and Association of Community Cancer Centers, "Increasing Racial and Ethnic Diversity in Cancer Clinical Trials," Journal of Clinical Oncology. https://ascopubs.org/doi/10.1200/JCO.22.00754
"Promoting Diversity through an Understanding of Barriers and Drivers for Inclusive Clinical Trials," PMC. https://pmc.ncbi.nlm.nih.gov/articles/PMC12018620/
National Institutes of Health, guidance on community engagement roles, responsibilities, and return of results. https://www.nih.gov
Comments