Poll: Underrepresented groups interested in clinical trials but aren’t being asked

October 2024

Despite low participation in clinical trials among people of color and LGBTQ+ individuals, polling data released by the PAN Foundation* from a survey conducted in partnership with The Harris Poll, shows that these groupsโ€™ interest in clinical trials is exceptionally high and perception is positive. Eighty-three percent of people of color and 86% of LGBTQIA+ respondents said they have a somewhat/extremely positive perception of clinical trials, with 3 in 5 (61%) of all respondents stating that they are very/somewhat interested in participating in a clinical trial in the future. However, among those who have never participated in a clinical trial, the top reason given by all populations is simply that no one has asked.

In fact, for those who have sought out information about clinical trials, the number one resource has been their own online research (45%). While healthcare providers are a trusted source for most people of color and LGBTQIA+ individuals (80% and 79%, respectively), very few have been approached by their healthcare provider with information on clinical trials. Specifically, only 22% of people of color and 20% of LGBTQ+ respondents have talked to their healthcare provider about participating in a clinical trial.

Key study findings

The PAN Foundationโ€™s Center for Patient Research worked with The Harris Poll to conduct the online survey of over 4,000 U.S. adults, oversampling individuals from historically underrepresented populations. Additional findings include:

Interest

  • 65% of LGBTQIA+ respondents and 58% of people of color respondents expressed interest in participating in a future clinical trial.
  • More than half (53%) of respondents said that the COVID-19 pandemic did not change their interest level in clinical trials. However, those whose interest was impacted by the pandemic are evenly split between those saying that it increased (26%) or decreased (22%).

Communication and information

  • Though interest appears high, nearly 9 in 10 respondents (87%) say they would need to know more about the specifics of clinical trials to consider participating. However, over 70% report that they would consider participating if their healthcare provider (HCP) encouraged them (71%) or if they knew the findings would help people who look / identify like them (72%), particularly Black respondents (74%).
  • Involvement and communication with providers could contribute to clinical trial participation. Nine in 10 respondents with an HCP, regardless of background, trust that their provider has their best interest in mind (90%) and say that their provider includes their input in healthcare decisions (89%).
  • Specifically, more information on the cost and reimbursements (81%) and patient confidentiality (80%) might influence respondentsโ€™ willingness to participate. White respondents express more interest than people of color for information around cost/reimbursement (82% vs 78%) and patient confidentiality (81% vs 78%).

Motivation

  • Among people of color who have participated in a clinical trial, the top reason for choosing to participate is to help others (40%). Those who expressed interest in participating cited wanting to contribute to medical research/advancements and help others as their number one motivator.

Awareness

  • Only 33% of people of color respondents and 42% of the LGBTQIA+ respondents were aware that underrepresented populations have been harmed in the past in clinical trials.
  • Even fewer (10%) were aware of the lack of representation in clinical trials.

Representation in clinical trials

Representation in clinical trials is critical for improving equitable health outcomes, due to its vital role in ensuring that treatments and vaccines are safe and effective for everyone. When a trial includes many groups, there is greater confidence a potential treatment is safe and effective across all populations.

Unfortunately, that is not currently the case. According to data from the Food and Drug Administration, in 2020, 75% of clinical trial participants were white, 11% were Hispanic, 8% were Black, and 6% were Asian. This is particularly troublesome because many of the underrepresented populations are disproportionately affected by the diseases and conditions being studied.


Methodology statement

The research was conducted online in the United States by The Harris Poll on behalf of the PAN Foundation among 4,492 completes age 18+ who reside in the U.S. The survey was conducted July 1 – 19, 2024. The survey was offered in both English and Spanish. โ€‹

Data for Hispanic, Black/African American, Asian, and Native Hawaiian/Other Pacific Islander/American Indian/Alaskan Native, White race/ethnicity subgroups are each weighted individually where necessary by: education, age by gender, region, household income, household size, marital status, employment, aggregated language proficiency (Hispanic only), LGBTQIA+ status (excluding Native Hawaiian/Other Pacific Islander/American Indian/Alaskan Native), and political party affiliation to bring them in line with their actual proportions in the population. A post-weight was then applied to combine all data and weighted where necessary by race/ethnicity (except White). Separately, due to overlap with the other samples, data for the LGBTQIA+ sample are weighted where necessary by education, age by gender, race/ethnicity, region, household size, marital status, and smoking status to be online to bring them in line with their actual proportions in the population. โ€‹

Respondents for this survey were selected from among those who have agreed to participate in our surveys. The sampling precision of Harris online polls is measured by using a Bayesian credible interval. For this study, the sample data is accurate to within + the below percentage points using a 95% confidence level:โ€‹

  • Hispanic: + 4.5 percentage pointsโ€‹
  • Black/African American: + 3.6 percentage pointsโ€‹
  • Asian: + 4.2 percentage pointsโ€‹
  • Native Hawaiian/Other Pacific Islander/American 0Indian/Alaskan Native: + 9.6 percentage pointsโ€‹
  • White: + 5.3 percentage pointsโ€‹
  • LGBTQIA+: + 4.1 percentage pointsโ€‹

This credible interval will be wider among subsets of the surveyed population of interest. All sample surveys and polls, whether or not they use probability sampling, are subject to other multiple sources of error which are most often not possible to quantify or estimate, including, but not limited to coverage error, error associated with nonresponse, error associated with question wording and response options, and post-survey weighting and adjustments.

*PAN Foundation and Patient Advocate Foundation announced a strategic merger in March 2026, operating as Patient Advocate Foundation. Learn more at Uniting.PatientAdvocate.org.