Why We Built Curated Clinical: Putting Community Voices at the Center of Health Research
Clinical trials, in plain words
A clinical trial is a research study that tests whether a new medicine, vaccine, device, or treatment is safe and actually works. Every medicine in your cabinet went through one.
Before anyone joins, they go through informed consent: a plain-language explanation of what will happen, the possible risks, and their rights. That includes the right to ask questions, to say no, and to leave at any time. An independent committee called an IRB (Institutional Review Board) reviews each study to protect the people in it.
Who is missing from the research?
In the median clinical trial, only about 5% of participants are Black, even though Black Americans make up 13.6% of the U.S. population (Harvard Kennedy School, 2022). One major review of FDA (U.S. Food and Drug Administration) data found Black patients were enrolled at a median of one-third the level needed, and that held before, during, and after the FDA's five-year diversity plan (Health Affairs).
It hasn't fixed itself. In the FDA's report on drugs approved in 2025, Black participants still had the lowest enrollment of any racial group reported (FDA Drug Trials Snapshots 2025).
Why does that matter? Medicines don't always work the same way in every body. When whole communities are left out, we don't learn how a treatment works for them. Only about 20% of studies reported results on benefits and risks specifically for Black patients (Health Affairs).
Why "just trust us" doesn't work
Distrust of research has deep roots, and it's earned. But many people who "don't participate" were never given a fair chance to.
Before Curated Clinical, we built a tool called Digital LinCS. It helped people living with HIV apply for free or low-cost medication. When we studied where people dropped out, it wasn't because they didn't care. It was the system. Renewals required in-person visits that people without reliable transportation couldn't make. Paper applications mailed to the state got lost. In one year, a batch of about 30 applications, full of private medical and financial information, never arrived.
The lesson has shaped everything since: when people fall out of health systems, fix the system. Don't blame the person.
Our story
For more than a decade, Dr. Allison Mathews Allen has run community crowdsourcing contests. They started in academic research on HIV cure research and HIV self-testing, then continued contests to develop campaigns to raise awareness about PrEP (a daily HIV prevention medicine) in Baltimore and COVID-19 vaccine trust in North Carolina.
When we began working with drug companies, we saw that they face the same trust gap universities do. Good science was stalling because communities weren't part of the conversation. So we built Curated Clinical: a platform where communities help shape how research is designed, explained, and shared.
Crowdsourcing vs. traditional engagement
The World Health Organization defines crowdsourcing as having a large group, including experts and non-experts, solve a problem and then share the solution with the public (WHO/TDR practical guide, 2018).
There's evidence behind this approach. A review of crowdsourcing in HIV and sexual health found three of four randomized trials suggested crowdsourcing is an effective, low-cost way to improve HIV testing and condom use (Current HIV/AIDS Reports, 2019).
Why we chose this model
Ideas from people who live it land better. A message written by your neighbor sounds different than one written in a conference room.
People's time and knowledge deserve respect. Contests recognize and reward what communities contribute.
The insight keeps working. Themes from community entries help research teams rewrite consent forms and recruitment materials in words people actually use.
Your voice, your community, your health
Join Curated Clinical to learn about research, enter our next contest, and help shape the studies that shape your community's health.