Sponsored By:
CISCRP
Presented By:
Dr. Patrick O. Gee, Healthcare Consultant and Community activist
Sandy Powell, Community Engagement Research AdvocateHope Ventricelli,
Senior Manager, Community Events and Programs, CISCRP
Yejide Obisesan, Administrative Director at Georgetown-Howard Universities
Center for Clinical and Translational Science
Information empowers patients and researchers. Dr. Patrick O. Gee, Healthcare Consultant and Community activist; Sandy Powell, Community Engagement Research Advocate; Hope Ventricelli, Senior Manager, Community Events and Programs, CISCRP; and Yejide Obisesan, Administrative Director at Georgetown-Howard University, Center for Clinical and Translational Science, discussed this at the Black Health Matters Spring Summit.
Gee was motivated to participate in advocacy after being told why he was passed over for a clinical trial by a healthcare professional. Ventricelli inquired about his experiences.
“I was rejected from the study, and when I asked why she made this exact statement, he who owns the data owns the patient, and Patrick, you can’t be in the trial because we can’t get any money,” he told the audience. “That was very devastating to hear since that was the very first time that I was able or wanted to participate in a clinical trial.”
It was hurtful, but it added context to his clinical experience. “Your data is money. Medical companies make money off of your data because they will sell it to other researchers without your permission. Make sure when you sign the dotted line, you reread it, you take your time. If the trials team is trying to rush, you get up and walk away,” he advised. “You don’t want to end up being the next Henrietta Lacks or being a part of an egregious clinical trial.”
He has studied the details of trials to advocate for himself and suggests others do the same. “One of the things that people should know before they begin with a trial is to do research on the trial,” he said.
“One of the keys for me has been to ask questions, and that’s one of the things that I think we have been accustomed to someone spewing information at us, and we’ve been hesitant to ask those questions, and so on the front end, I’m asking questions.”
Obisesan reminded the audience that they are in control of their data. “You get to read that informed consent and go through it for as long as you want. And you can ask any questions if there’s a word that you don’t understand or if a timeline or something doesn’t make sense, you can ask any questions, and also you’re allowed to take that informed consent sheet with you,” she said.
Powell shared her own experience with rejection. “I have attempted to participate in three clinical trials. I have not been accepted as a result of the data that they were looking for,” she said. She uses her own clinical experience to advocate on both sides of the research spectrum. She could seek to improve patient-researcher relations with perspective.
“One of the things that I’ve had an opportunity to do through the patients’ program is to look at it on the back end through the lens of a researcher that’s looking to do it but also able to lend a voice on the other side of the fence as part of the community,” she said. “I’ve had an opportunity to sit in some of those panels to actually lend a voice to that.”
She described how she has been able to contribute by helping to facilitate helpful interactions that provide aid to potential participants before asking for their time and energy.
“We go into communities, and we’re not going looking for anything. We’re not asking for anything, but we’re going to see how we can be of assistance to the community, and some of the things that we’ve been able to do, as a result of that, through the program is provide transportation services for the community,” she said. Her teams have also provided food and other benefits “before we turn around and say, hey, we need you for some clinical information.”
Obisesan agreed that changing methods can change outcomes. “There can be, I’d say, a mild naivete and a lack of understanding in what it really means to approach a community and ask them to participate in research, especially communities that are underrepresented in research and they’re underrepresented for a lot of historical reasons,” she said.
“There can also be a paternalistic approach to coming to communities about education,” she added.
She recommends respecting “the knowledge and the history that community members have and approaching them like a partner with humility.”
Obisesan agreed that changing methods can change outcomes. “There can be, I’d say, a mild naivete and a lack of understanding in what it really means to approach a community and ask them to participate in research, especially communities that are underrepresented in research and they’re underrepresented for a lot of historical reasons,” she said.
“There can also be a paternalistic approach to coming to communities about education,” she added.
She recommends respecting “the knowledge and the history that community members have and approaching them like a partner with humility.”
“That makes a difference in communities coming in and saying, I do want to be involved,” she continued.
