Underrepresented groups are interested in clinical trials—but aren’t being asked
PAN Foundation’s Opening Doors to Clinical Trials national initiative creates a movement to increase diversity in clinical trials
Despite low participation in clinical trials among people of color and LGBTQ+ individuals, new data released by the PAN Foundation from a survey conducted in partnership with The Harris Poll, shows that these groups’ 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.
“At PAN, we’re dedicated to making sure everyone has equitable access to healthcare and that includes clinical trials,” said Kim Baich, Chief Diversity & Health Equity Officer. “This survey is groundbreaking in that it shows that the populations who have been underrepresented, and often undervalued, want information and an invitation. We are debunking the perception that these communities are hard to reach when it comes to clinical trials. What we are finding is they aren’t hard to reach–they are hardly reached. PAN wants to change that.”
Key study findings
PAN’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 respondents’ 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 diverse representation in clinical trials.
We are debunking the perception that these communities are hard to reach when it comes to clinical trials. What we are finding is they aren’t hard to reach–they are hardly reached. PAN wants to change that.”
Kim Baich, Chief Diversity & Health Equity Officer, PAN Foundation
Diversity in clinical trials
Diversity 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 diverse groups, there is greater confidence a potential treatment is safe and effective across all populations.
Unfortunately, that is not 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.
Opening Doors to Clinical Trials initiative
In response to the need for greater diversity and guided by the key findings of the 2024 survey, the PAN Foundation has launched the Opening Doors to Clinical Trials education initiative, a multi-year movement empowering people with comprehensive tools and resources to navigate the complexities of clinical trials, including those who have felt left out or overlooked. The program has several differentiating components including one-on-one support, an easy to navigate trial finder, and person-centric content. Learn more at our clinical trials education resource website.
The Opening Doors to Clinical Trials initiative aims to:
- Provide personalized assistance
Complex topics such as clinical trials can be difficult to navigate on your own. PAN’s ComPANion Access Navigators will be available to provide one-on-one help answering questions about clinical trials when additional support is needed. - Increase health literacy with digital education
The PAN Foundation’s comprehensive awareness and education initiative takes people on a journey through the complex world of clinical trials. Our clinical trials education website is easily navigable and incorporates health literacy and cultural sensitivity considerations. The content gives people the knowledge they need to better understand the basics of clinical trials while also addressing medical mistrust and misconceptions and the urgent need for greater participant diversity. - Address medical mistrust directly
Our digital education is designed with underrepresented populations in mind. PAN addresses past mistakes and current systemic mistrust. Our program educates audiences on the importance of diversity in clinical trials, encouraging people from underrepresented communities to consider whether a clinical trial is right for them. - Empower people to take action
Once people have received the core education necessary to determine if a clinical trial is right for them, they may be ready to take the next step and search for a trial. PAN has developed an online clinical trial finder that removes barriers to trial access by providing a streamlined, user-friendly approach to searching for a trial.
“PAN is ready to serve as that trusted resource that empowers people with the information they need to begin their clinical trial journey,” stated Kevin L. Hagan, president and CEO of the PAN Foundation. “If we don’t make a greater effort to reach these populations, entire future generations could be left behind from advances in medical research and potential new treatments. We cannot, and will not, sit by and watch that happen.”
Learn more about our clinical trials education initiative
Visit clinicaltrials.panfoundation.org.
About The PAN Foundation
As a leading charitable foundation and healthcare advocacy organization, the PAN Foundation is dedicated to accelerating access to treatment for those who need it most and empowering patients on their healthcare journeys. We provide critical financial assistance for treatment costs, advocate for policy solutions that expand access to care, and deliver education on complex topics—all driven by our belief that everyone deserves access to affordable, equitable healthcare.
Since 2004, our financial assistance programs have helped more than 1.2 million people to start or stay on life-changing treatment. In addition, we’ve achieved major policy victories that increase access to care, mobilized patient advocates to call for change, and educated people nationwide on critical healthcare-related topics. We’re committed to working towards a future where equitable health outcomes are a reality for all.
About The Harris Poll
The Harris Poll is a global consulting and market research firm that provides the insights needed to build a better tomorrow. Founded in 1956, The Harris Poll is one of the longest running surveys in the U.S. tracking public opinion, motivations, and social sentiments. Every year, the firm polls millions of people on the trends that are shaping our modern world.
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.
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.
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:
- Hispanic: + 4.5 percentage points
- Black/African American: + 3.6 percentage points
- Asian: + 4.2 percentage points
- Native Hawaiian/Other Pacific Islander/American 0Indian/Alaskan Native: + 9.6 percentage points
- White: + 5.3 percentage points
- LGBTQIA+: + 4.1 percentage points
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.