Developing new medical interventions helps life-saving treatments reach the greater population. But before they can reach everyone, these must be tested to ensure they’re safe and effective. In clinical trials, these are tested in humans.
In order for a medicine to help the general population, it follows that the development process should reflect all of the people it seeks to treat. Historically, though, clinical trials have not been inclusive of Black people — or worse, treated them like “lab rats,” as put by Philly biotech entrepreneur Tia Lyles-Williams, who is working on the issue with her forthcoming HelaPlex life science hub.
It’s a health equity issue.
King of Prussia, Pennsylvania clinical trial payment company Greenphire hosted a panel on the topic at its 2021 Patient Convenience Summit on Wednesday. The panel of experts including Danielle Coe, founder and CEO of Black Women in Clinical Research; Shawn Trutna, global patient recruitment strategy lead for Worldwide Clinical Trials; and Trishna Bharadia, advocate and patient engagement advisor for The Spark Global. The conversation was moderated by Greenphire Senior Analyst Jaleeysa King.
Here are some key takeaways from their session.
It starts with digital access.
As with so many realms of life during the pandemic and beyond, tech equity is needed for community education about clinical trials, and health more broadly. If you don’t have a computer or an internet connection, you might not be able to learn about treatment options, or research opportunities.
“We have to figure out how to get technology to others to establish an equal playing field,” Trutna said. “This is not to say we should give up on technology solutions; we should keep going and enhance them. These communities need advocates to facilitate [learning].”
Community voices can make outreach easier.
To recruit groups that don’t often participate in clinical trials, enlist the help of locally trusted advocates. It’s a best practice that’s been noted before for issues such as spreading the word in communities about digital skills training (see #2 here).
“They’re not necessarily reaching the underrepresented or seldom heard groups,” said one panelist. “Reach out to advocates that have trust of the community. We have to ask ourselves, ‘If traditional channels haven’t been working, what can we do next?’ That’s where the impetus and push has to come.”
Having difficult conversations can lead to healthier lives.
Coe shared that having transparency in community spaces such as barber shops, beauty salons and churches can allow communities of color to discuss health matters.
“With my church, we’re having those conversations talking about COVID,” she said. “When you leave church you can go out to the left and get vaccinated. We should make that a place where we have these conversations.”
Demystifying clinical research can expose more professionals to the field.
As a student at Clark Atlanta University, an Atlanta HBCU, Coe remembers having limited options related to clinical research due to a lack of information on the subject.
“At my HBCU, clinical research was never considered a career option,” said Coe, whose LinkedIn profile indicates she studied biology in college. “When I took that pivot in college, it was to work in a lab or you could be a teacher. [Now] we are partnering with colleges and universities with contract research organizations and pharmaceutical companies so this information is available to everyone.”
Information about clinical trials should be translated into languages other than English.
Bharadia believes that improving health literacy includes information being available for people in a variety of languages.
“There is so much info out there because of the internet, however, so much information is only available in English,” she said. “It’s not an equitable way of educating people so that they do understand clinical research better. It’s about creating equitable patient engagement.”
Get creative with community engagement.
During time Bharadia spent in London, she noticed a novel, inventive way to get young Black people to test for HIV.
“They set up testing booths at choir practices,” she said. “It’s overcoming the hiding of things under the carpet, something that happens in many ethnically diverse communities when it comes to illness. People don’t want to be seen. In thinking about these things and going to where the people are instead of waiting for them to come to you is something we have to do moving forward.”
A similar example is in the nonprofit Philadelphia FIGHT incentivizing teens to get tested for HIV with a hip hop concert: To get tickets, teens and young adults must take a free rapid test or participate in an education session.
Know that historical inequities have made communities of color hesitant to participate in medical research.
Coe referenced a recent conversation with an aunt about her aunt possibly volunteering for a clinical trial to convey the hesitation Black people have around medical research. Black people like Henrietta Lacks, the inspiration behind Lyles-Williams’ HelaPlex, were mistreated by the medical system and left wounds that are still healing.
“We have to talk about Henrietta Lacks and how things have changed to prevent this from happening again,” she said. “We can’t sweep issues under the rug expecting people to forget.”
Michael Butler is a 2020-2022 corps member for Report for America, an initiative of The Groundtruth Project that pairs young journalists with local newsrooms. This position is supported by the Lenfest Institute for Journalism.