The minority population was 38% of the total U.S. population in 2014 and is expected to rise to 56% by 2060. Although minorities make up more than a third of the U.S. population, they make up less than 10% of patients enrolled in clinical trials, according to the National Institutes of Health (NIH) National Institute on Minority Health and Health Disparities. Minorities may react differently to medical products and therefore clinical trials need to have better representation of this population.
Education to increase the awareness, knowledge of both the minority patient and the physician is essential for successful diversity in clinical trial participation. Both require more research and tools for recruiting by all participants involved in clinical trials. Let’s look at some of the key factors (minority patient education; physician education) and falsehoods (the availability of minority patients) related to minority participation in clinical trials.
Minority Patient Education
Education of minority patients is needed to provide an understanding on what the trials are about, what’s required of the participant, where trials are available and the potential benefits, in the hope of overshadowing the negative history of minority participation in clinical trials. Minority patients need to feel empowered to demand quality healthcare and have all the information and understanding they need to make decisions about their participation in clinical trials.
Arguably even more critical though, is that physicians need to be educated as well. Physician education needs to dispel some of the thoughts and negativity about minority patients such as that they are difficult to recruit, prefer minority physicians, are too culturally sensitive, are less experienced and are more costly. It might also help if more minority physicians were involved in clinical trials. Physicians should fully recognize sex and ethnicity based differences in the disease prevalence, features and symptoms. It is a foremost concern that we recognize the unconscious bias of some physicians that prevent them from including minority patients in clinical trials.
Trial sponsors and investigators are developing new paths and tools for finding and engaging minority patients. One way to inform and build trust is to reach out in the community, for example with a program that elicits the support of community leaders, churches, barbershops, salons, and other sources of community outreach to minority patients. These resources help to engage the patients before they reach the physician office.
Feedback on the ground
While participating in a health education presentation on Precision Medicine with our health education outreach group we heard about a biorepository program at the University of Arizona Sarvar Heart Center. We were not asked by our physicians to participate but it was noted that participants were needed. Many of the group agreed to participate and we made that a part of our outreach education because we felt it would be beneficial to improvement of medicine for minorities.
Here are comments and suggestions from 6 members participating in the biorepository research program:
“This program was not difficult to participate in because I received the education in a comfortable setting. Even though not asked by my physician, the researcher explained the need and the benefits. I recognized that here was a need for minority participation to help improve medicine that would fit the patients. There were no negatives to participating in this trial.”
“In the past minorities were very rarely asked to participate in clinical trials.”
“The program was easy to participate in; hours and location were somewhat convenient. I feel a mobile testing unit would increase participation in communities of color. Persons of color are under represented in most clinical trials. For me, donating a blood sample is a first step towards African American inclusion in precision medicine research. The [release] form was not complicated but it was longer than I anticipated. I would also suggest the medical community make more of an effort to increase their presence in the community and build trusting and strong relationships.”
“This program was not difficult. I called and got my questions answered. It was convenient because I scheduled a time after our WHHE meeting. It resonated with me that not enough African Americans were participating in clinical trials. In this way, we are being left behind like so many issues. Although the mistrust of the government or medical industry can be understood after so many times the African American has been used and abused.
A negative, if it could be classified as negative, was not knowing the status of the trial. You have my blood but I do not knowing if it was helpful to study. If more positive feedback was given about trials, maybe more people would volunteer.
How do we get people to participate in anything where their health is concerned? Unfortunately, it’s not until the doctor gives you bad news that all of a sudden you want to exercise, eat right and hug your family. We hand out information that can help with their quality of life and no one shows. Getting information out to the community is the hardest thing because we really don’t have something that all minority folks will gravitate to like back in the olden days (smile). We had neighborhoods where everyone knew each other for blocks. The children played together, joined the same clubs and this aligned the people up to support whatever the cause. Neighborhood parties, neighborhood barbeques … The other side to this coin is getting past the trust issue. Right now, during this pandemic, many Black folks have their brows raised on how so many of us have died from COVID-19…some young, in good health. It doesn’t make sense so you have theories which perpetuate the mistrust.
I wish I knew this answer because it would help me to get more people of color interested in their health to do something about it.”
“Participation in the program was very easy. I felt that more African-Americans should participate. (However, they have to overcome the fear or be assured that some kind of negative experimentation or information might involve them.) Minorities need to receive the information about clinical trials, etc. Where to find it, who’s reputable, etc. but mostly need the information. Put it on a website….talk about it on Facebook.”
“The program was well explained, easy to participate and convenient. I was glad we did it in a group because questions came up I had not thought of. For me, I choose this trial because it only required blood draw one time. If it had required taking of “medication “or several blood draws or vague explanation about the study, I might not have participated. These studies never give enough information, nor any feedback of the study to those that participate.”