Focus groups
There were a total of 64 focus group participants, 29 of whom were African American and 35 of whom were Latino. No participant self-identified as both African American and Latino. All participants completed the focus group. Within the group of participants who were Latino, 71.4% spoke Spanish and 28.6% were bilingual (English and Spanish). Over half the participants in both ethnicity subcategories were from large geographical areas and were female (See Table
3). There was a significant difference in preferred language by race.
Table 3
Sociodemographic characteristics and group differences of the participants of the Focus Groups
Education |
High School or less | 24.1 | 48.6 | 4.04 |
College (some college to completion) | 55.2 | 37.1 | |
Graduate (some graduate to completion) | 20.7 | 14.3 | |
Preferred Language |
English | 100 | 0 | 64.00*** |
Spanish | 0 | 71.4 | |
Bilingual (English + Spanish) | 0 | 28.6 | |
Urban/Rural |
Large urban area (> 50.000 people) | 82.1 | 82.8 | 1.12 |
Small urban area (2500—50,000 people) | 14.3 | 17.2 | |
Rural Communities (< 2500 people) | 3.6 | 0 | |
Gender |
Male | 44.8 | 22.9 | 3.47 |
Female | 55.2 | 77.1 | |
| Mean (SD) | Mean (SD) | t-value |
Age | 47.75 (16.40) | 41.90 (9.73) | 1.76 |
Across the focus groups, six broad themes were identified on considerations for recruitment materials and practices to reach diverse populations. We briefly describe each theme below.
Theme 1. Employ diversity and inclusion in recruitment efforts
Participants stressed the importance of appealing to diverse audiences through recruitment materials and outreach efforts. Some participants emphasized the consideration of access for non-English speakers and elders, in particular. Among Latino participants especially those who were Spanish speaking, there was emphasis on the need to use the Spanish language. African American participants stated the recruitment materials should reflect and appeal to the languages spoken in an increasing multicultural community. One participant advocated for the inclusion of a telephone number and an internet address on the recruitment materials to meet the needs of the multicultural community members. The participant stated,
“If I don’t have internet, if I can’t manage the internet, I’m an elder person, but I find a phone number, I can call. “Do you speak Spanish?” “Yes” so there is a Spanish service. You either speak Spanish or English, whatever –. Or they speak both. Yes, but if an African comes, who speaks at least English, not Spanish, but good English. So both should be offered there, with a phone number in which you can be given information, if you don’t or can’t manage the internet.”
Theme 2. Access multiple recruitment channels to increase reach and possible participation
Participants noted that minoritized groups have differential access to information and, by extension, opportunities to participate in a research study or clinical trial. Suggestions were made to use diverse forms of media to reach larger audiences while promoting study participation. Use of electronic communications (email, text messages) and social media (Facebook, YouTube) were commonly mentioned among participants. Traditional media campaigns using newspapers, PSAs on the radio (with “serious” stations), billboards, and television in the areas where the target populations live was also suggested. However, some participants also stressed that some people have limited access to or do not know how to use the internet. Furthermore, some stated that older people may prefer to rely on print and television. One participant offered a multi-pronged approach that integrated multiple outreach strategies. The participant stated,
“Then, [have] a commercial maybe because you have commercials every day asking for help for research people to come do studies. I see 'em all day on T.V. Come help us out with this study on this medication. If you are having a study in your area, broadcast more. Have some people out on a Saturday at different parts of town where you know there's gonna be people, and you pass this out with someone that speaks very pronounced, like, this is a pamphlet if you would like to have this and help us study research on diseases that we are trying to find a cure for.”
Participants across groups emphasized a need for a person-centered, yet place-based approach to recruitment. The idea of researchers establishing a relationship and being involved with the community was commonly mentioned. Particularly, researchers need to come to neighborhoods where people reside. One participant said, “You have to put some foot work into some stuff like this and get it out in your neighborhood, to get the word out, because you got people's family members that's suffering from each one of these diseases that would read upon this and want to participate.” Participants further suggested stuffing mailboxes and passing out flyers “door-to-door” in places where “everyday” activities occurred in addition to health and medical facilities (e.g., clinics, hospitals, WIC office, pharmacy). These recommendations were based on their personal experiences and knowledge of their communities.
Participants also discussed the need to be creative in distributing materials to reach diverse audiences within a town or city. Placing materials in accessible locations such as flyers on the counter in the “corner” store, in bags at a pharmacy used for prescription pickup, or through a postcard inserted in the daily newspaper were commonly mentioned. Sharing information using posters, flyers, or a bulletin board could occur in libraries, housing facilities including public housing resident meetings, barber shops or beauty shops, places where food is sold (e.g., in stores and restaurants), shopping malls, stores in Latino communities, YMCA, church services, health ministries, community events, health fairs, bus station, and schools and colleges. Overall, participants felt “the more you put into it, the more you'll get out of it.”
Theme 4: Personalize outreach and recruitment to specific groups’ beliefs and values
Participants also advocated for a proactive, personalized approach to outreach and recruitment. Having someone to talk to in-person about the research was important. Participants stressed the need for telephone hotlines and/or on-site assistance to address questions and enroll subjects. A participant stated, “I want to talk to somebody who knows what they are talking about and can tell me a reason why I should stay on this phone call.” Suggestions include having a doctor, nurse, or other recruiter attend a community gathering to talk about the disease and the available clinical trial(s) or holding a workshop to provide counseling or information to address concern on the clinical trial.
The types of messaging to increase personalization was discussed by the participants. Some participants highlighted the use of strength-based messaging. For example, a nurse could state that "we have a study, we support you, we help you.” Another option was use of direct appeals. One participant suggested “set[ting] up a table in a clinic and when you come through the door”, "Let me explain this to you and see if you could be a participant.” One participant stated the recruiter's race or ethnicity should reflect the population targeted. As a recruitment strategy, two Spanish-speaking participants suggested adopting community-oriented, public health prevention approaches that are found in one’s country of origin, where teams of doctors and nurses come to neighborhoods to conduct “medical workshops” on an identified health issue.
To reach Spanish speakers, along with other cultural minoritized groups, participants suggested providing options to communicate with someone who is familiar with one’s native language on the phone or in person. One participant observed that at local health fairs there is a lot of information provided, but often the providers or recruiters speak only English. Having multi-lingual recruiters would be beneficial, enabling potential participants to “feel more confident in approaching them, and for the person to explain it to you, and you’re able to participate.”
Participants offered insights grounded in their family structure, household composition, and community ties, addressing the role of elders as family leaders and children as culture brokers. By targeting seniors and doing in-person outreach, an African American participant suggested that researchers could reach multiple generations (i.e., children and grandchildren). As this participant noted, “We still have the hold over them,” an observation that spoke to the role of elders as a family leader and community gatekeeper. Spanish-speaking participants emphasized sharing information in public schools so that children could bring it home to their parents, as well as providing information in places “where we go for our kids,” such as pediatrician offices.
Participants shared that people would accept information from trusted people in their community and places where they felt “linked.” African American and Spanish speaking participants noted the primary role of the church in their communities was to be a source of spiritual fellowship, social ties, and information that could provide a “wealth of people and knowledge.” In particular, African American participants discussed the importance of connecting with the pastor of the church to reach the membership. Spanish speaking participants suggested providing information during church services in Latino communities. One participant observed, “If you want people to notice you, go to the church. When the priest finishes mass, before the blessing, the priest allows groups to talk. You can say something quick, and the people who are interested, you tell them, “I’ll see you in the back.” … That’s how it works for people.” One participant offered that, in general, word of mouth recruitment is strong in Latino communities, emphasizing the importance of trust and personal connections.
Theme 5: Align recruitment messaging with language preferences and motivations for study participation
Reflecting on their motivation to participate in a clinical trial, participants across the focus groups stated they had reasons for participation and suggested that messaging on recruitment materials should align with their motivations. Motivations for participation varied across participants. Many stated they “wanted to help people”, had a “willingness to be part of the solution”, and/or wanted “to help find a cure” or “save lives”. A participant stated, “We can be a part of, or can help to find a cure. Many times, we can’t do much for other relatives if they’re going through a problem, but the fact that I can contribute to the cure is very good.” Participants further reflected on their personal experiences along with those of a family member, friend, or community member who suffered from diseases including cancer, diabetes, kidney disease, sickle cell anemia, or asthma. They stated they would participate to support these individuals. A participant stated, “You might have a neighborhood with a family member that has the disease, that is suffering one of these diseases, that gets this pamphlet, and be like, "This might help my mom," or "This might help my sister." Another participant spoke to the value of relating potential participation to one’s family and sense of altruism, saying "If your loved one has a disease, you have the opportunity to help." Such an emotional appeal carried greater weight than an impersonal statement from an unknown clinician such as, “We'd like to have some information from you.”
Prevention of diseases was another motivating factor. Being aware of family history of disease or susceptibility to disease would motivate participation in a clinical trial. Particularly a few participants suggested use of disease prevalence statistics in the recruitment materials. One participant stated, “I’m at risk of suffering that disease might make me volunteer.” Furthermore, a potential benefit of participating in a clinical trial that could be highlighted is the receipt of preventive health care particularly if one does not have health insurance. However, it was noted to address the concern that participation does not cause one to lose health insurance, a fear that negatively impacts recruitment rates. Participants noted the importance of conveying that “any person can help.” Knowing “all types of people” are valued and can contribute to clinical research would motivate participation, despite differences in language, age, sex, race/ethnicity, religion, and citizenship status.
Motivation to participate was also related to the tone and pitch of the recruitment materials. “Testimonials of those who have really been able to prevent or have benefitted as a result of their participation in this program” would motivate participation, as would statistics about the prevalence of a particular disease to increase knowledge. Specific recommendations from the African American participants were to include a call to action, reassure confidentiality, inform participants of potential risk and opportunity for health education, and use a clear and recognizable logo. In terms of language, they stated to avoid negative terminology (i.e., “disease”), use inviting words such as “learn” instead of “join,” and include humor to reach younger people. Latino participants had suggestions on images, including use of medicine-related imagery, research volunteers and scientists, and sensationalized images (e.g., smoking ads). Additional recommendations from the participants were to include testimonials, animation in materials, a Quick Response (QR) code to the study website, and information on the research organization and supporting organizations. In addition, they stated to specify if registration for the study is free. Linguistic suggestions were to include the term “disease” as the first word, include statistics on disease risks in the targeted population, and make the messaging more targeted to “YOU”.
Theme 6: Specify incentives for participation
Participants perceived compensation was important and understood that “each study has different compensation”. In addition, many participants stated that compensation “would depend on the type of study”, conditions, and duration. Being compensated for one’s time and contribution was viewed pragmatically, especially if it involved a long period of time. Participants highlighted that donating one’s time, even if for a few hours, could mean missing out on other income-generating opportunities or personal responsibilities. As one participant noted, “Well, if y'all are going to put me in the hospital for two weeks, of course I want to be compensated for my time. I mean, I'm missin' part of my life.” There were two participants in a focus group that were open to participating for free, noting the value of “learning.” One participant even stated that learning about the results of the study and whether it was beneficial was an incentive. Among African Americans, a clear description of incentives for participation was emphasized.
Participants reported receiving incentives for taking part in previous [unspecified] studies. Incentives included food, gift cards, and t-shirts. Incentives were identified as motivation for study participation with one participant stating a need for a $100 incentive. However, another participant expressed wariness of an incentive with a high value as that signaled greater risk if involved. The participant stated, “The bigger the number, the more I feared … we’re talking about $600.00. And I thought, “Wow, what are they going to put in me? Why are they giving me $600.00? What are they going to give me?”.