Facilitators and Barriers to Contacting and Recruiting Older Minorities for Research: A Qualitative Study

Maya Clemente, Steinhardt '25

Bachelor of Science: Global Public Health/Nutrition and Dietetics

Background

In the United States, older minorities, specifically those 65 and older, experience healthcare disparities regularly, an occurrence which is well documented in the literature—an underdiscussed facet of the inequalities in demographics for research recruitment and participation. It is crucial to understand the negative impacts of excluding this vulnerable population from research. Americans 65 and older account for 65% of healthcare spending, despite making up 18% of the population (McGough et al., 2024). Leaving nearly 20% of the population out of the research means that the findings may not apply to the general population. The older minority population, specifically those over 65 who identify as members of racial and ethnic minority groups, accounted for 14.5 million in 2022, and is expected to increase to 34% of older adults by 2040 (ACL, 2024). Thus, leaving them out will yield skewed and ungeneralizable results, not to mention that it may prove harmful as medicine develops and they are excluded from modernization. While the problem has many reasons for occurring, one of the most prominent is the unsuccessful recruitment and contact of older minorities. Thus, this paper will explore the facilitators and barriers to contacting and recruitment, providing a foundation for change.

Introduction

Equity in Research/Statement of Need

Inequity is a part of everyday life for minorities in the United States, and coupled with the sense of invisibility that cloaks older adults once they age, it makes older minorities a vulnerable population who are forced to endure health disparities. The terms health equity and health inequality/disparities are often ill-defined, as the qualitative question is founded on making recruitment for research studies more feasible and accessible for the population, it is worthwhile to establish definitions (Braveman, 2006). Healthy People 2020 defined health disparities as:

“a particular type of health difference that is closely linked with economic, social, or environmental disadvantage. Health disparities adversely affect groups of people who have systematically experienced greater social or economic obstacles to health based on their racial or ethnic group… age… or other characteristics historically linked to discrimination or exclusion.” (Braveman, 2014)

In this paper, the focus lies on racial and ethnic groups and age as the primary factors causing health disparities in research recruitment. However, it is essential to acknowledge that given the two primaries, the following are often of concern as well: socioeconomic status, mental or cognitive status, and physical disabilities, as they can all provide barriers for successful recruitment and cause hesitancy to participate. This study aims to build on others in its commitment to creating health equity in research recruitment and participation, thereby creating an even chance at making applicable and population-relevant discoveries in health. Defined as

“commitment to reduce—and, ultimately, eliminate—disparities in health and in its determinants” (Braveman, 2014). As it is only through diverse research populations that we can ensure elderly minorities are not forgotten and ignored in the face of life-changing discoveries.

Trust

Throughout the author's time at BRInging the Diabetes prevention program to Geriatric populations-Spanish (BRIDGE-S), it proved increasingly difficult to reach and then successfully recruit older Hispanic adults. Recruitment was done via cold calling patients from a pre-established pool and inquiring if they were interested in participating in an over-the-phone survey. Consenting and recruitment were done in both English and Spanish. It is estimated that over 50% of possible participants never picked up the call, 10% were invalid numbers, and another 15% answered and then declined. There was a noticeable reluctance to share information, even with an incentive. Gaining trust proved very difficult when there was only a 20-second window to sell oneself and the study. Knowing that this population is difficult to reach for a myriad of reasons such as language and education differences, a general sense of mistrust of the healthcare system due to personal and historical reasons, fear of giving out their information especially if they are undocumented or migrants, and simply not wanting to talk to someone they don’t know about their medical status. A study looking at willingness to participate discussed mistrust as the primary factor stating, “older Black and Hispanic adults, a majority of respondents (60%) agreed that mistrust of researchers is a reason for not participating in research, yet also 95% agreed that Black and Hispanic populations should be included more often in research” (Milani et al., 2020). From this, the desire to adapt contact and recruitment methods to the older minority population was born. It is unreasonable to expect complete trust and a high success rate when the methods used, and the study team are not designed with the population's needs in mind.

Methods

Study participants

A qualitative research question was developed as a result of recruiting and cold-calling minorities aged 65 and older to complete a survey for the BRIDGE-S research study. A study dedicated to adapting the national diabetes prevention program (DPP) for Hispanic and Spanish-speaking older adults. To answer the research question, key informant interviews were conducted with two clinical research coordinators (CRCs) at NYU Langone, both of whom work with the specified population. CRC Ⅰ worked on a qualitative study between NYU Langone and Dartmouth, looking at communication between care providers and their patients diagnosed with dementia. The population consisted mainly of those 65 years old, with a few early-onset patients younger than 65. CRC Ⅰ estimated that 40% of the participants recruited by NYU were primarily Spanish-speaking, and 60% of the population was of a minority race or ethnicity. CRC Ⅱ worked on the BRIDGE study, a DPP tailored to those 65 and older and mainly English-speaking to reduce the risk of type 2 diabetes. They targeted those with pre-diabetes, determined by A1C. CRC II stated that the study was ideally targeted at racial and ethnic minorities, but given the pool from which to recruit, it ended up having a 30:70 breakdown, with significantly more non-Hispanic whites being recruited and enrolled.

Instrumentation

Both interviews were conducted and recorded via Zoom, allowing for automatic transcription upon completion. The interviews were semi-structured; the base interview consisted of 14 questions with several probing points. Given the semi-structured nature of the interview, some follow-up questions were asked, even though they were not on the initial list. Additionally, some questions were omitted because they did not apply to the CRC studies. Transcripts were analyzed to identify similarities and differences in the informants' responses, which allowed for further exploration of the methods and barriers.

A literature review was conducted before and after the interviews to identify common facilitators and barriers to recruiting the population and to determine if hypotheses and observations made by the authors and a research assistant at BRIDG-S, as well as the two informants, were supported. The results of the initial search formed the questions for the interview. In contrast, the latter search allowed for a greater exploration of their points and increased the validity of the interview results.

Results

Throughout the researchers' two years working at BRIDGE-S, it was observed that many factors contribute to inequity in healthcare, particularly in research. Most importantly, in the contact and recruiting, a hypothesis was created on the best methods for the population. Medicine and healthcare are about creating personalized solutions to specific problems, so why should the process of contacting particular groups of people not be modified for their specific needs? Whether this is for the visually or auditorily impaired, people with physical disabilities, or language barriers. Everyone deserves equal access to materials and services. During the researchers’ time recruiting and consenting older Hispanic adults, this allowed for the formation of the hypothesis that cold calling is not the most accurate method, given the population. A thought later confirmed in the two key informant interviews, which offered tried solutions of mailing a letter and then later calling, having the primary care provider (PCP) reach out to make possible participants aware, stopping by the PCPs office during the appointment to establish trust and validity, as well as hosting community events to create familiarity and ease of recruitment.

The results of the literature review suggest that 42% of adults 65 and older report owning smartphones. Whether this means they are ready or willing to participate in research virtually is another thing (Anderson, 2017). Due to the vast differences in comfort with technology, those closer to 65 are more willing to participate virtually and report higher comfort levels online, while those closer to 80 experience a marked decrease in comfort and confidence in technology use. It is therefore critical to offer solutions and options. Virtual aspects of research can be incorporated into a successful research study with older minority participants when done in a particular manner. Such as when contacting participants for follow-ups, when there is an existing relationship, and making research accessible to those with physical disabilities (Khanassov et al., 2024). One possible method is the TIBaR model created by researchers at the Institute for

Gerontological Research and the Robert Koch Institute in Berlin, Germany (Kammerer et al., 2019). It is a comprehensive model to “gain access to older people who are difficult to contact,” based on four steps: 1. build up Trust, 2. offer Incentives, 3. identify individual Barriers, and 4. be Responsive (TIBaR). They reasoned that healthier older people are more likely to be willing to participate in research studies and, if, necessary, travel to locations, while those who need research are less likely to be studied or share information (Kammerer et al., 2019). TIBaR was implemented in two studies, where potential participants were contacted to build trust and a positive relationship. The pillars of TIBaR re-emphasize all that had been discussed at this point, the importance of building trust, they implemented various attempts one being contacting potential participants via trusted intermediaries, offering incentives whether it be emotional, informational or monetary, identify barriers such as mobility and lastly responsiveness to their needs such as providing an interpreter or reimbursing travel expenses. The discoveries and methods used in the TIBaR study were consistent with similar studies that examined the best methods for recruiting and enrolling the population. The most significant common point in the literature and the interviews was trust and flexibility, as stated by CRC Ⅰ: “We let them know that they are in control and everything is up to them. We are at their service.”

Discussion

BRIDGE-S provided great learning and observation opportunities. The author learned that patience is a requirement when working on research, not just when dealing with participants, as the overall process and progression of scientific research are not fast-paced. When dealing with participants, you have to have patience and dedicate time to them, as echoed by both CRCs and in the literature. You may be the only person that they talk to all day, so giving them grace to tell their story, even if it comes with tangents and pauses, will do more for the work and one's personal growth. The older minority population is a vulnerable but valuable one. People who have a rich history and, at times, complex medical concerns, there is a lot that the world can learn from them. Their alternative medicine, born in the wake of inadequate medical care due to discrimination or lack of access, their passion, drive, and strength are all good qualities of a research participant, and most of all, their willingness to help others. It was observed that most, if not all, of the people the author recruited during her 90-hour internship consented to the study to help the author or to help others. Their participation was an act of selflessness, although some were certainly swayed by the monetary incentive as well.

While interviewing the CRCs, the most notable aspect was their passion for the population and desire to make a difference in their lives. Given that they were both minorities themselves, they described a need to help their community feel more valued, understood, and at ease. CRC II even went so far as to say he tried to play the role of their grandchild, to form a relationship of trust and respect. Both agreed that the research process went better when the participant felt as if they were reflected in the researcher. They said that you trust someone more when they look like you, and there's a greater chance they understand your experiences. A statement often reflected in media and real life, people feel safer when a member of their community advocates for them. In the author's experience, it rang true as well; people were more receptive to participating when their Hispanic last name was used or when the Spanish pronunciation of the primary investigator was mentioned.

Based on the barriers discussed regarding language, education, technology, location, physical disabilities, transportation, and trust, it is clear that changes need to be made. Rapidly so, given the growing percentage of older adults in the United States, leaving older minorities out of research will be detrimental to the entire population as we continue to grow and learn. Strengthening and implementing facilitators such as readily available resources in many languages, translators, transportation aid or reimbursement, paper, virtual and in person options, compensation, the involvement of trusted persons, respect and patience are just some aspects that will all aid in the successful recruitment and retention of older minorities in clinical research. In looking at BRIDGE-S, future recommendations for a similar study would involve their healthcare providers, mailing of information, and then calling to obtain consent or performing it in person at the clinics or community centers. The work of BRIDGE-S is crucial to mitigating chronic diseases in the older minority population, but it can only be successful and impactful if there is a sufficient pool of participants. Meeting the population where they are is most important.

Given that another significant barrier is mistrust of the healthcare system, learning how to build trust and establish relationships is necessary for the inclusion of minority older adults in research. As mentioned in a review study published in the Journal of Aging and Health, “mistrust is grounded in well-documented examples of unethical medical research with ethnic minorities,” going on to give examples like the Tuskegee study, the use of enslaved African Americans and indigenous people as test subjects, or when African Americans and Latinos received the experimental vaccine, called Edmonston-Zagreb to study its prevention abilities for measles (Moreno-John et al., 2004). This painful history, coupled with negative individual experiences, makes older minorities unwilling to participate in research. They also discuss the same trust bias aspect mentioned by both CRCs, “A larger percentage of African Americans prefer to work with a scientist of the same race. For example, 37% of African American women, compared with 2% of White women, preferred to be treated by an African American scientist” (Moreno-John et al., 2004). This problem would be solved by cultivating diverse research teams, although this leads to a deeper problem: unequal access to higher education, which in turn affects healthcare and research jobs. It is important to recognize that opportunities should be given regardless of differences. A diverse team will create a diverse research population that is more likely to trust the study.

Strategies and Implementation

The first strategy would be to use multiple methods of contact for older possible participants, mailing a letter, sending a notification via their e-health chart, and calling are all individually mediocre methods of introducing yourself as the researcher and your study to the population. However, when coupled together, these can produce great results. As mentioned previously, the older adult population has a large range of ages and varying comfort levels with technology. Therefore, when targeting anyone above 65, it is best to use at least two methods to appeal to both the younger and older ends of the population.

One objective for success in outreach is to follow the TIBaR method. The authors’ experience, coupled with key informant interviews and a literature review, proves that this method is easily understood and replicable. Additionally, it is easily adaptable to a variety of studies, given the flexibility of how trust is built, the types of incentives available and appropriate, the ability to be responsive in different manners, and the varying ways to build trust. Another objective would be to break down the steps of contacting and recruiting and ensuring that the same people are always reaching out to their list of potential participants. For example, should research assistant Ⅰ be assigned to the first 200 potential participants, they should mail letters where possible and then follow up with a phone call, a minimum of two, maximum three phone call attempts with voicemails should be done and consenting and if possible intervention or survey should be done by the same research assistant Ⅰ. This would be done to provide consistency and allow multiple attempts, so the participant can choose what works best for them. Secondly, striving to build trust between researchers and the older minority population is key. Even if you reach them successfully, if they don't trust you, all your effort is rendered null. At the hospital, university, or organizational level, hosting community-building events to build familiarity and knowledge of the research will help the community feel welcome and considered by prominent research institutions. At the study level, involving trusted healthcare providers, community members, or visiting community centers can help build trust at or before the recruitment stage. Lastly, forming a diverse research team so that potential participants feel more comfortable and believe their interests align with the study is critical to overcoming the hesitancy that minorities feel around healthcare professionals and researchers who are of a non-Hispanic white race and ethnicity. A primary objective would be to create a diverse team, in an effort to reflect the population, whether through language, race/ethnicity, experiences, or other trust-building factors. The second objective would be to create a large sense of trust and community between the targeted population and the research and healthcare world. This can be sustained through regular community events such as a hospital-funded fair for Juneteenth, or the creation of monthly or weekly language classes funded by a university to help older adults with their English, or technology sessions to provide a space where older adults can ask questions and get assistance. The goal is to show the population that you care about them beyond the issue you are studying.

Conclusion

Older minorities are not people we can cast aside, and given their rising rates, not just including them in research but prioritizing them is crucial to the success of future discoveries and chronic illness education and prevention. The drive to create equity in clinical health research can only be implemented with the right tools and knowledge of the population. Together, they can provide a space where older minorities are a vulnerable but valued population, rather than an ignored and hurting one.

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