Engaging Underrepresented Populations in Medical Research

R Scott Wright, MD; Sharonne N Hayes, MD; LaPrincess C Brewer, MD


December 04, 2014

Editorial Collaboration

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A Unique Collaboration

R Scott Wright, MD: I'm Dr Scott Wright, a professor from Mayo Clinic. Today I have the privilege of convening a roundtable review on the perceptions and attitudes toward health-related research participation among African American women. I'm joined by my colleagues, Dr Sharonne Hayes, founding director of the Women's Heart Clinic at Mayo Clinic, and now director of diversity and a long-time researcher in this field, and Dr LaPrincess Brewer, one of our advanced clinical fellows, who has done graduate work in this topic.

We are here to discuss an absolutely brilliant survey and paper, led by Dr Brewer and Dr Hayes, about the perceptions among African American women and their participation in clinical research.

Let me start by saying to both of you, well done. What a fantastic paper and research project. The paper is titled "African American Women's Perceptions and Attitudes Regarding Research Participation in Medical Research: The Mayo Clinic/The Links, Incorporated Partnership," published in the Journal of Women's Health.[1] It was designed by a team led by Dr Hayes. Describe for us the background for this study and how you became connected with the Links, and what a great opportunity it has been.

Sharonne N Hayes, MD: Like many things that happen at Mayo Clinic, it was patient driven. A very grateful patient who was a Links member wanted Mayo to work with The Links to advance both of our missions, particularly with respect to health disparities. We worked with Dr Monica Parker, who is a family practitioner and was their national chair of health and human services. She is at Emory University.

We discussed mutual priorities and decided that this was an important one. Dr Parker said, "There is no research about people like me—educated individuals who maybe are just not asked. We need to be part of the solution for African American health." It was through her mentorship and leadership and our collaboration that we came up with a way to use the resources at Mayo Clinic to develop the survey and use The Links as the perfect survey participants.

Dr Wright: The survey participants are by any measure a group of leaders who are empowered. Among these women, 95% are either actively working or retired as professionals, and 95% have college degrees. More than half earned more than $150 000 a year, and about one-third to one-half are very successful women leaders. What was it like to sit in the room with these powerful people? You can describe them, but I imagine that they were leaders in every community in this country.

Dr Hayes: The Links is a national organization of the leaders in their communities. They are doctors, lawyers, judges, and business owners, and it was very clear in having conversations that they wanted to make a difference in their communities. The Links isn't just a charity to which people donate money and then they are done with it. They require a certain number of volunteer hours every year, and women are out of the organization if they don't complete them.

This is a group of women who want to make a difference. This aspect of health and human services and health disparities was a relatively new focus for the organization, so it allowed us to leverage the talents and enthusiasm of that group.

Have Attitudes Overcome History?

Dr Wright: Amazing. Dr Brewer, could you summarize briefly for us the findings of this initial paper?

LaPrincess C Brewer, MD: We sought to evaluate the perceptions and attitudes toward medical research among African American women of The Links, which is an international service organization. We thought that this group would bring a unique perspective compared with traditionally studied lower socioeconomic groups. We surveyed them on their willingness to participate and their intention to participate in medical research and also obtained their attitudes, in general, toward research.

We had great results. We found that they were willing to participate in a variety of research studies, particularly those involving interviews and those that might involve the provision of blood samples. Their overall attitudes toward research were positive. Most felt that participation in research was beneficial to society, it would mean better care for them and others in the community at large, and that it would help to reduce health disparities.

Dr Wright: Historically, this has been a community of research participants in whom it has been challenging to find enthusiastic participation, correct? Historically, we have the unfortunate Tuskegee Experiment that took advantage of a group of African American men, and there have been perceptions within minority communities, in general, about what this means. Will I be treated fairly? Will I get the best care? Were any of the findings surprising to you, Sharonne, in terms of the history, and do you still see us as having a significant amount of distance to cover to improve research opportunities for nonmajority groups?

Dr Hayes: It was heartening that among this group, who are leaders and thought leaders in their communities, there was a much greater acceptance of being a part of research, and so we looked at that as an opportunity. We might use The Links in their communities to help move things.

On the other hand, what surprised us, was that there still was a fairly high level of concern about the use of their medical records. We can only conjecture, but maybe this represents a sense of mistrust about privacy.

The mistrust is because most healthcare organizations and researchers are people in a big building that is far away; people who don't look and act like our participants. We still have many things that we need to do as a research organization to be in those communities, because that is the only way that we will build that trust.

Trust and Mistrust

Dr Wright: About 21% of the survey respondents believed that it might be unsafe to participate in clinical research. These respondents are the most upwardly mobile and economically and socially empowered members of any community. They are very well-educated, highly intelligent, and highly successful, yet one-fifth of them are concerned. That proportion struck me as a little high. I would have expected it to be lower, but I accept it for what it is. What insights did you glean from that?

Dr Hayes: We didn't have a reference group, so I'm not sure how a general population might respond to that same question. When you think of research, some people talk about being a guinea pig. If you have end-stage heart disease or end-stage cancer, you may be much more willing to participate and take that risk. We were asking a predominantly healthy population, so for them, they might have been thinking, "Well, I'm feeling well now, what might happen if I do this?"

I don't know what to make of it, but it tells us that we need to address that up front in our consents, in our conversations with all research participants, to weigh the risks and benefits.

Dr Wright: And we need to reassure them that they lose no option for healthcare by just participating in research.

Dr Hayes: That's right.

From "Us and Them" to "We"

Dr Wright: Dr Brewer, what lessons do you see here for individual researchers when talking with patients and trying to recruit more minority subjects? What lessons can researchers learn? Dr Hayes, I'm going to ask you if you could talk about it from more of an organizational and a big-picture standpoint.

Dr Brewer: I agree that to increase the diversity of our research pool, we must go out into our communities and educate people on the benefits of research participation and let them know how we plan to use the data from clinical trials for their direct benefit and toward the eradication of health disparities. It is also very important to move from an "us" vs "them" to a "we" paradigm; toward redefining our research priorities. This can definitely assist us in developing more of a partnership between medical institutions and our communities.

Dr Hayes: I will build on that because in our community-based participatory research initiatives at Mayo and across the United States, we are going into the communities, talking, and meeting, whether at places of worship or at The Links national convention. That says we are partners and that is the best way to do this. It is just like being invited to a friend's home—there is a different comfort level from seeing someone at work.

We need to up our game on that. From an institutional standpoint, we need to train our colleagues to be comfortable and embrace this, because it's a very different paradigm from what we have traditionally been taught about research.

Wearing my diversity and inclusion hat, I think increasing the diversity of our staff and our researchers is critical. If we don't have individuals who are researchers from the community that we are reaching out to, then we need to use such novel methods as hiring community liaisons who can help researchers understand the cultural needs and the communication needs of those communities.

These are things that we are doing more frequently at Mayo, and I believe that they are going to reap a lot of benefits for us.

Engaging the Community

Dr Wright: As I understand it, the two of you are involved in a couple of innovative research projects at the moment, one looking at houses of worship and one doing remote-based cardiac rehabilitation care to address these issues. Would either of you care to comment on those projects and describe what you are doing and what innovations others might bring to their practices?

Dr Brewer: As a part of my passion, I would like to increase awareness of health disparities, not only among the population that I plan to study but also among my colleagues in medicine. Through community-based participatory research in local African American churches, I plan to increase knowledge and awareness of heart disease so that I can, in turn, help to eradicate this in a population that needs the most help possible.

Currently, we are working with local African American churches here in Rochester, Minnesota, with a prevention program in which we bring in experts from Mayo Clinic to teach our participants about heart disease risk factors.

Dr Wright: How is it being received?

Dr Brewer: It's going very well. They are really excited to see our faces; are eager to learn and are excited about the long-term partnerships that can come out of our research.

Dr Wright: This is marvelous. So researchers should not be afraid of being creative and going into the community?

Dr Brewer: Not at all.

Dr Wright: Sharonne, do you think we can improve healthcare delivery doing the same models?

Dr Hayes: This is the only way that we will improve healthcare delivery, because if we aren't including all of our populations under our care, and we don't understand their cultural, educational, and health needs, then we won't improve it.

Another thing that came out of this project and the partnership with The Links is ongoing. The senior author on this paper, Dr Carmen Radecki Breitkopf, is a co–principal investigator with a Links scientist at University of Michigan. We have received National Institutes of Health funding to take this initiative and work with The Links chapters to develop educational programs for the influential Links members and for them to take it into their communities to increase awareness about the need for full participation by all communities. Through that full participation will be better health.

Keeping African-American Women in Trials

Dr Wright: I spent the past 7 years working on some large clinical trials, and we identified that minority women were among the most likely to discontinue study drugs. Trialists feel strongly that unless the trials can be generalized to all populations, the data are less than perfect, and yet we struggle with trying to figure out how best to retain these subjects. What advice do you have for trialists watching today about how they can better keep subjects who are less affluent or who are in minority populations in trials?

Dr Hayes: They need to be creative and understanding. Research like this will better inform and help our research colleagues. If you are recruiting for a trial and you are not getting enough of any type of subject to have meaningful data, then target that population and bring in someone who is interested in those communities. We have people here in Rochester who are specifically working with Somali communities on gastrointestinal diseases that affect Africans. You can't just walk in and say I would like to study liver disease in you today.

Having those community connections is probably best, and perhaps doing exit interviews on individuals who decide to drop out of a trial to understand why. Was it childcare? Was it parking? Especially for women, was it being a caregiver for someone at home and being unable to make appointments?

Dr Wright: And also recognizing that perceptions and attitudes about distrust and historical issues, and being sensitive to those. Congratulations to both of you and all of your colleagues on the paper. It's a tremendous initial publication. I look forward to more research. Dr Brewer, I hope that you will continue this passion for your entire career because you are off to a great start. Thank you for your commitment to doing this.

I want to thank our guests, Dr LaPrincess Brewer and Dr Sharonne Hayes for joining us. I want to challenge those of you reading this to consider what you can do to engage more underrepresented populations to participate in clinical research so that the data we discover can be taken to all populations and help all people. This is Dr Scott Wright from the Mayo Clinic division of cardiology.

See You Can Make a Difference, a video explaining the importance of African American participation in medical research, which can be shared with potential research participants.


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