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For Cancer Centers
Black women have been drastically underrepresented in clinical trials, accounting for only 3% of clinical trial participants leading to FDA approval of cancer drugs between 2008 and 2018
In order to test how drugs work on Black bodies, we need more Black women in clinical trials.
Disrupting the status quo
In 2021, TOUCH, The Black Breast Cancer Alliance, Morehouse School of Medicine, Breastcancer.org, Ciitizen, the Center for Healthcare Innovation, and Susan G. Komen partnered in order to design our own research that would investigate the emotional barriers to clinical trial participation for Black Breasties.
You can read more about our findings here.
We leveraged the insights and findings from our research to develop When We Tri(al), a movement to advance breast cancer science for Black women. As of June 2025, When We Tri(al) has garnered over 200K website visits and over 4 million impressions as well as having sent over 27K individuals into clinical trial portals.
Increasing Clinical Trial Participation of Black Women Diagnosed with Breast Cancer
Black women make up less than 3% of breast cancer clinical trial participants.
In their own words, here’s what Black women said about why they don’t participate:
1. Earned medical mistrust
We need messaging to acknowledge the mistakes of the past and let them know what has been introduced to make sure nothing like that happens in the future. — Participant, Stage 3C
2. Fear based on myths & misconceptions, including:
Clinical trials are a last resort. I always looked at it as the last resort like… nothing else is working, that at that point you really wouldn’t have anything to lose so you might as well do a clinical trial. — Participant, Stage 4
I’ll be an experiment or a guinea pig. And as far as being a guinea pig and trying something new before they’ve tested it. It’s an experiment to me and I don’t want to be a part of an experiment. — Participant, high-risk group
I’ll get the sugar pill and die. But you always get scared. Are you getting the real thing or the sugar pill? And then you don’t know until it’s over that you didn’t get [a real drug]. — Participant, Stage 4 If you do a trial, you’ll get the sugar pill and die! — Participant, Stage 4
3. Black women aren’t being asked
I never thought to ask… one wasn’t offered, and I never asked. — Participant, Stage 2A
4. Clinical science feels predatory
They really don’t trust the science and they see a lot of pharmaceutical companies making a lot of money and not coming down to the communities unless they are doing some kind of trial.. they’re just experimenting on us for our information. And then they’re just going to make money from it, sell it to other people to make more money. — Participant, Stage 2 BRCA+ I think we should get recognition, and they shouldn’t try to just take our information. I don’t like the fact that they take our information, and we don’t know if it helps somebody. We don’t get recognition for what we’ve done or compensated for what we’ve done. I just feel like it’s wrong. — Participant, Stage 4
What we’ve learned about how to talk to Black women about clinical trials
1.
Elevate Black voices.
Elevate Black voices.
The most trusted messengers in the breast cancer ecosystem—more than doctors or any other healthcare professionals—are other Black breast cancer patients, survivors, and thrivers. If you can, consider training Black patient advocates in your cancer center so that they can support conversations with new patients about clinical trials.
Anyone is welcome to use the videos in our video gallery to help introduce patients to clinical trials and to help bolster trust.
2.
Acknowledge the past.
Acknowledge the past.
Many Black patients are familiar with the Tuskegee Syphilis Study and Henrietta Lacks. Even if they are not, they have felt the repercussions of these injustices within the Black community. It is important to acknowledge this earned medical mistrust when you talk to Black patients about clinical trials.
Try something along the lines of: “I can understand why clinical trials might sound threatening. The history of medical research has earned your mistrust. But there are laws in place to protect participants now.” Introducing and explaining informed consent and standard of care can also help to build trust.
3.
Keep it simple.
Keep it simple.
Hyper-clinical language is not only confusing, it’s othering. When talking about clinical trials with patients, challenge yourself to explain the opportunity in clear and easy to understand terms. Also understand that people learn in different ways—using printed materials, videos, and stopping often to create space for questions can all help to support understanding.
4.
Ask patients directly why they are hesitant.
Ask patients directly why they are hesitant.
Too often, medical professionals assume and misidentify why Black patients may seem resistant to a trial. The more you know about your specific patient, the more directly you can address their concerns or worries.
5.
Understand that it’s a family affair.
Understand that it’s a family affair.
After a patient leaves your center, there are two groups of people they will likely talk to: their pastor and their family members. Because of community-wide earned medical mistrust, the patient will need to explain and defend clinical trials to these people. Sending a patient home with resources (including the When We Tri(al) website) and someone they can call (a navigator or social worker), helps to ensure that they can face family conversations with information and support.
6.
Timing is everything.
Timing is everything.
We know that the #1 reason Black women aren’t joining clinical trials is because they aren’t being asked.
Introduce clinical trials early, so that patients have time to process the idea and you have time to educate about trials. When timing is limited, understand that the more space and time you can offer a patient—even an extra day—the more likely it is they will consider a trial.
7.
Give us a why.
Give us a why.
We have found that the most impactful messaging speaks to participating for the betterment of others—for fellow Black breast cancer patients, for future generations, and for the community as a whole. When presented with this lens, Black breast cancer survivors/thrivers responded:
Being a part of history in the making helps reduce the ideas around fear and threat. I’m doing it for myself but also generations of women who have breast cancer.
— Participant, Stage 3C
It makes you think beyond just yourself, but the value that you’re participating in a clinical trial could give to generations in the future. It speaks to legacy… Your participation could be far-reaching. — Participant, Stage 2-3
It makes you think beyond just yourself, but the value that you’re participating in a clinical trial could give to generations in the future. It speaks to legacy… Your participation could be far-reaching. — Participant, Stage 2-3
8.
A picture is worth a thousand words.
A picture is worth a thousand words.
If you are using print or digital design in your communication with Black women about clinical trials, make sure that the images reflect your audience.
Show a diverse representation of Black women (different shades, hairstyles, ages, etc.).
Try to stay away from heavily used stock imagery of Black women either looking upset in hospitals or looking unrealistically happy.
Are you addressing your Black patients’ logistical needs?
Do you offer free parking/transportation or do you offer financial support for these services (including gas cards, ride vouchers, etc.)?
Do you offer free childcare or do you offer financial support towards childcare?
Do you offer patient navigators or social workers to your Black breast cancer patients?
Do you have Black providers on staff?
Is the inclusion/exclusion criteria for the trial disproportionately excluding Black patients? If so, could you modify or remove those criteria while maintaining the scientific integrity of the trial?
Does your research team engage with your navigators and vice versa?
Are you using patients who have successfully completed a clinical trial to help speak to its value and need? If you need support training Black breast cancer patients as advocates, reach out to us!
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