Support for Recruiting Special Populations

During a recent Q&A, SCTR’s Integrating Special Populations (ISP) Program experts discussed the importance of the inclusion of special populations in clinical and translational research. In Part I, a definition of special populations was provided, followed by a discussion of several lessons learned by the experts.

Part II features some additional highlights from the group discussion, with a focus on the specific support available through ISP to assist researchers in recruiting special populations, a review of some common pitfalls, and key strategies researchers should incorporate to increase success.

How can ISP help researchers recruit special populations?

Tara Pittman
We have one-on-one consultations or participant engagement groups where we can bring in representation from your study population and get feedback on your protocol or your recruitment plan.

Ideally, we can usually be the most supportive when we help you design an effective strategy from the beginning because then you can budget accordingly and set yourself up for success with minimal IRB amendments. But that doesn't mean that you shouldn't reach out to us if you're already in the recruitment stage or part way through running your subjects and you're feeling like you're lacking the representation and the sample that you need. Even if you feel like you don't have a budget or you are stuck in certain ways, there are always adaptations that can be made during the research process, at least to increase the likelihood of a different representation.

“Sometimes you can write what you think is the perfect recruitment protocol. But if it doesn't work, you have to be willing to say, “OK, let's try Plan B.” And it may require multiple IRB amendments to get you to your goal.” -- ISP director Marvella Ford, Ph.D.

Marvella Ford
We're here speaking as researchers who have faced the same struggles as everyone else. We are here to help based on our review of the literature. We've contributed to best practice models in the literature, and our help is coming out of our own experiences.

Sometimes you can write what you think is the perfect recruitment protocol. But if it doesn't work, you have to be willing to say, “OK, let's try Plan B.” And it may require multiple IRB amendments to get you to your goal. We've all been there. We've all had to make changes in our studies and adaptations to increase diversity.

Studies funded by the NIH are required to have a certain level of diversity. We want to help studies become more representative. The aim is to include samples that match national diversity statistics, but the study sample should match the representation of the local population. For example, in South Carolina, Black people comprise 27% of the state population, but that may be even higher within a local region.

Stephanie Gentilin
I think ISP does a great job leveraging the resources that SCTR offers as well as doing joint consultations with our recruitment core. We closely work with our community engagement program. We don’t work in a silo. We try to leverage the existing resources and expertise to give researchers the most well-rounded approach to having a representative sample. As a program, we do really good work with other SCTR programs locally, and we engage in opportunities at the national level to learn and share best practices with our consortium partners.

Marvella Ford
In Our DNA SC, an enterprise-wide genomics project, is one example. The National Institutes of Health recently met with leaders of the initiative after learning that 15% of our recruited participants are non-white, an exceptional statistic when compared with typical diversity of genetic and genomic research participants.  

We feel that a lot of this success comes from the guidance the ISP core offered In Our DNA SC through multiple meetings with the research team. They created a community advisory board with our recommendations. We've worked with them on their recruitment materials too, recommending they be written in plain language. We worked through issues, just trying to communicate in clear, concise language, what the study was about and conveying some of the concerns that we heard from community members. There's transparency, there's inclusivity, and all of this has helped to achieve at least the year-one outcome of 15% non-white participants.

“Ideally, we can usually be the most supportive when we help you design an effective strategy from the beginning because then you can budget accordingly and set yourself up for success with minimal IRB amendments.” -- Tara Pittman

Cristina López
SCTR’s support from the beginning of a research trajectory is really what I recommend to others, especially trainees and junior faculty members but also for full-tenured professors who are reaching out for the first time to help polish and perfect their recruitment pathways. Having that support early on can be really impactful. It is an amazing resource to have ISP, as well as the other SCTR opportunities for support. We're very fortunate at MUSC.

How can support be accessed?

Are there any resources or new technology that you would recommend?

Kimberly Brown
There are some broad resources that we recommend for recruitment and inclusivity at various stages of the research process, but often our consultative recommendations are population or protocol specific. One broad resource is SCTR’s Core Clinical Research Training. We have an ISP module that covers a lot of the same topics addressed in this blog series in greater detail. A couple of broad, population-specific resources that we often recommend regarding LGBTQ+ inclusion and sexual orientation and gender identity (SOGI) data collection are the NIH Sexual & Gender Minority Research Office and the Fenway Institute. While these templates are easy to implement and facilitate greater inclusion, they are just a starting point. For ISP to make specific recommendations, it would be important for us to understand more about the specific protocol.  

Stephanie Gentilin
Awareness is key. It's not only making sure investigators have represented that community but that the communities are empowered to understand what opportunities are out there for them and that they can also be engaged and seek opportunities. They don't have to sit back and wait. They can leverage technology with something like SCresearch.org (South Carolina Research Studies Directory) or ResearchMatch (a free and secure online recruitment tool) to put more power in the hands of the community rather than the researchers.

Cristina López
That's an excellent point about SCresearch.org or even ClinicalTrials.gov. We had a patient who was moving from Michigan to South Carolina and was interested in research opportunities for people living with HIV and reached out to our team. You need to make sure that the active participation piece is established and disseminated.

I think there are also a lot of projects, specific resources, and technology that are the product of research. When we think about the research process from start to finish, we should make sure that the full cycle includes dissemination and going back to the communities that you recruited from to make sure you show the impact that their active participation had in producing a new app or website that they can now use that is tailored to their experience. I think that's where the resources and new technology are powerful—when they are the product of why people were participating and why potentially they want to become active.

Are there any other common pitfalls that you would like to help research teams avoid?

Marvella Ford
Even if we feel like we have the same background as the people we're recruiting, it's important to remember that we represent an institution and maybe a government.

Even if we physically look like, talk like, or sound like the people we're recruiting for a study, we still want to follow the recruitment recommendations and strategies that have been shown to work.

And when we go to the communities, we're representing MUSC and a federally funded study.

This is something that I had to learn when I was working with communities in Detroit to get an asthma study up and running. I thought “this is going to be so easy because I live in Detroit.” When they saw me, they just saw the health system that I represented and they had a lot of questions and concerns, so it was very humbling for me to understand that when we are investigators, researchers, or members of a research team, the first thing people see is the institution we represent. We're there representing an institution and we still need to follow the recruitment strategies and models that are the most effective.

Stephanie Gentilin
Dr. Ford offers a cultural humility training that touches on these topics. It is so enlightening and important for the research staff to understand. When you're going into communities, it helps prepare you to understand that community.

Marvella Ford
Yes, cultural humility training is available, and some are offered for MUSC diversity, equity, and inclusion credit hours. It's incumbent on investigators to learn about the communities that we're going to before we get there, learn as much as we can, and do our research. We do our due diligence for every other part of our research project. We should do the same with recruitment.

Another pitfall related to recruitment when we describe the different populations that we're recruiting is the rationale. If we're focusing on a specific population group, we need to ask why. The rationale for that focus should be in the background and significance section.

I met with an investigator who had a nice research idea and wanted to focus exclusively on black women, but I couldn't see any rationale in his proposal or a tie between black women and the study outcome. We want to be inclusive, but we also want to remember that we have to give a scientific rationale and justification for the inclusivity as well.

Cristina López
Along those lines too, even just like in your preliminary work section, you should show if you have an established relationship with a community partner. Many want a sprint but establishing partnerships and getting to know a community is a marathon. You want to listen and remember that while you're listening, they're trusting you to give an accurate response to establish that trust and build a partnership. This may involve doing health fairs and building in a service piece to research projects.

A common pitfall is not looking at the bidirectional benefit for the communities. You want to include any preliminary work and previous partnerships within communities.

Meet our Experts

Marvella Ford, Ph.D., has 17 years of research experience at MUSC, where she is a Professor in the Department of Public Health Sciences as well as the Associate Director of Population Sciences and Cancer Disparities, and Director of Community Outreach and Engagement, in the Hollings Cancer Center. She is a behavioral scientist with a strong track record in cancer disparities research, particularly recruiting and retaining diverse populations for cancer research studies and intervention design and conduct, with expertise in collaborating with local and national stakeholders to inform her research.

Cristina López, Ph.D., is an Associate Professor and has 21 years of research experience, including working on externally funded research projects recruiting under-represented populations (e.g., Spanish-speaking populations, rural Black youth, people living with HIV, and other trauma-exposed populations) as primary investigator in the past 10 years. In her current role as SCTR’s ISP Co-director, she helps in the delivery of consultative services, lectures, and focus groups to support research teams in their enhancement of representative samples in research activities across the institution.

Stephanie Gentilin, MA, CCRA, directs the SUCCESS research support services center and has over 28 years of clinical research experience. She oversees the delivery of SCTR’s high-quality, expert consultative services to investigators and research staff, and works to develop institutional research policies aimed at streamlining processes and breaking down barriers in conducting translational research.

Tara Pittman, MA, CCRP, has 14 years of research experience at MUSC. Before her role with SCTR, she worked as a program coordinator for research studies related to drug/alcohol addiction and trauma. She has also worked with the veteran population, coordinating trials at the Ralph H. Johnson VA Medical Center. In her current role as SCTR’s recruitment manager, Tara works in partnership with the Integrating Special Populations team to help identify novel and impactful ways to recruit particular groups, especially through local partnerships, community champions, and focus groups with populations of interest.

Kimberly Brown, MPA, joined MUSC 2 years ago, bringing with her an extensive background working in community-based advocacy organizations with various populations including refugees and LGBTQ+ individuals. In her current role as SCTR’s Special Populations (ISP) and Community Engagement (CE) coordinator, she supports team efforts to ensure that all MUSC studies are recruiting participants who are representative of our community through education, programming, consultation, and community connections.

Related Links

SCTR’s Integrating Special Populations Program

SCTR’s Recruitment Program