Prioritizing Recruitment: The Benefits to Using a Disease Registry to Recruit Older Adults with HIV and Intersecting Identities

Abstract

The success of a study hinges on its recruitment procedures, however there is a paucity of papers focused on innovative recruitment strategies, especially as it relates to the recruitment and retention of marginalized populations. This paper aims to outline how consent-to-contact databases can be used as an effective tool for recruitment. First, we begin by describing the consent-to-contact databases we used. Then, we offer insight into how a consent-to-contact database was utilized to recruit Latino older adults with HIV participants for an interdisciplinary behavioral and physical health promotion intervention. We outline barriers and challenges to recruitment and research participation with a specific emphasis on the unique hurdles associated with recruiting and retaining racial/ethnic minority older adults with HIV in behavioral health studies. Finally, we provide final recommendations for future researchers interested in how to best employ this type of recruitment tool in their own research.

Introduction

While the overall national trends in HIV incidence seem encouraging, these numbers provide an incomplete picture of the state of the epidemic since significant disparities remain in new HIV cases with certain age and racial/ethnic minority groups continuing to see increasing rates of acquisition. In 2018, about 1 in 6 people diagnosed with HIV were over the age of 50 (Centers for Disease Control and Prevention, 2020a). Although HIV incidence among older adults has decreased over the last few years, HIV prevalence among this age group has increased significantly. More than half of diagnosed people with HIV (PWH) in the United States (U.S.) in 2018 were over the age of 50 (Centers for Disease Control and Prevention, 2020a) with estimates suggesting the number of older adults with HIV (OAWH) over the age of 55 will more than double in the next 25 years (Hood et al., 2017). Similarly, in 2018, 90% of OAWH aged 55 and above were aware of their HIV status with significantly fewer engaged in routine care (57%) or achieving virally suppressed (64%; Centers for Disease Control and Prevention, 2020a). Although these statistics are promising in that they are higher than the U.S. national averages for adults with HIV(Centers for Disease Control and Prevention, 2020c), the rates of HIV-treatment progress among OAWH still fall far below the UNAIDS “90-90-90” goals established to help End the HIV Epidemic (Eisinger & Fauci, 2018; UNAIDS, 2014).

Due to social determinants of health, significant HIV health disparities continue to disproportionately affect HIV incidence and prevalence rates among racial and ethnic minorities. Trends in new HIV cases over the past decade allude to a rising epidemic among Latinos, particularly those above the age of 55 (Centers for Disease Control and Prevention, 2020c). Over the past decade, rates of new HIV diagnoses among Latino older adults rose by about 12%, leading the Centers for Disease Control and Prevention (2020b) to determine this demographic as one of the subpopulations most affected by the current U.S. HIV epidemic. Furthermore, once acquiring HIV, Latinos experience disproportionately poorer clinical outcomes compared with non-Latino whites. They tend to present with more advanced HIV disease at diagnosis and experience significant attrition after diagnosis (El-Sadr, Gamble, & Cohen, 2013; Trepka, et al., 2014). To improve clinical outcomes and achieve an AIDS-free generation, HIV research must address disparities in HIV outcomes in Latinos. However, despite the disproportionate burden of HIV/AIDS among older Latinos, there is a paucity of research examining the experiences of OAWH and other intersecting identities (e.g., race, ethnicity) as they navigate the aging process (Gonzalez et al., 2009). Perhaps, in part, due to challenges associated with recruitment and retention of older Latinos with HIV in research students exploring the effects of HIV and aging in this often-overlooked population.

Recruitment, more than any other stage of research, serves as the bedrock of any research project because of its lasting effects on the course of the project. The two main goals of recruitment are to engage participants who are representative of the population of interest and to enroll an adequate number of participants that will allow for the study to be sufficiently powered (Jimenez & Czaja, 2015). The success of studies stem from researchers’ ability to generate, execute, and monitor an effective recruitment and retention plan that prioritize external validity as way of increasing the beneficial impacts findings may have on the health and psychological well-being of people beyond just the study sample (Hendricks-Ferguson et al., 2012). Issues with recruitment can affect a study in multiple ways including added costs, additional work for study staff, disruptions of study timelines, challenges to internal validity and generalizability, and in worst cases, the abandonment of or forced closure of a study or trial. Additionally, a failure of recruitment may lead to the goals of a study never being realized and the potential impact of that study falling flat.

Since the success of a study hinges on the success of its recruitment procedures, it is surprising that there is a paucity of papers focused on innovative recruitment strategies, especially as it relates to the recruitment and retention of marginalized populations (Jimenez & Czaja, 2015). Therefore, due to this significant gap in the literature, and in an attempt to highlight the importance of centering recruitment practices in the larger research narrative, this paper aims to outline how consent-to-contact databases can be used as an effective tool for recruitment. First, we begin by describing the consent-to-contact databases we used. Then, we offer insight into how a consent-to-contact database was utilized to recruit Latino OAWH participants for an interdisciplinary behavioral and physical health pilot intervention. We outline barriers and challenges to recruitment and research participation with a specific emphasis on the unique hurdles associated with recruiting and retaining racial/ethnic minority OAWH in behavioral health studies. Finally, we provide final recommendations for future researchers interested in how to best employ this type of recruitment tool in their own research.

The CHARM Consent-to-Contact Databases: What Are They?

The CHARM consent-to-contact databases discussed in this report are direct products of the University of Miami’s Center for HIV/AIDS Research in Mental Health (CHARM) – a NIH funded P30 research program projects and centers, center core grant. Before discussing the ways in which we utilized these consent-to-contact databases to recruit participants for our own study, we will provide a brief overview of CHARM’s overall mission and how these consent-to-contact databases help to further CHARM’s research and training goals.

From its inception, the mission of CHARM was to not only bridge the chasms that have traditionally siloed biomedical and behavioral research, but also ignite mental health driven HIV scientific research in South Florida -one of the U.S. geographic areas hardest hit by the HIV epidemic. The mission of the center is threefold. First is to reduce the impact of mental health and minority health disparities across the HIV prevention and care continua. Second is to provide academic expertise in mental health focused, HIV-related, health disparities research, resources (e.g., monetary, infrastructure, etc.) to support and bolster mental health-related HIV research at the University of Miami (UM). Third is to lessen the likelihood of mental health disparities serving as barriers to biopsychosocial approaches in HIV prevention, treatment, and practice (charm.miami.edu). To help encourage and scaffold UM sponsored mental health-related HIV research - one of CHARM’s core goals – two distinct consent-to-contact databases were established to help researchers recruit participants living with HIV or at increased susceptibility of acquiring HIV more easily.

The CHARM clinic registry was created to serve as a centralized database consisting PWH currently receiving care at the UM/Jackson Health System HIV Clinic – two public option HIV-care clinics. The registry serves two purposes in that it provides researchers with a group of already identified participants who have consented to be contacted for future HIV related studies and also offers a host of rich patient data including patient demographics, levels of psychological distress, sexual risk behaviors, structural barriers to care, antiretroviral (ART) adherence, etc. for researchers to begin conducting interdisciplinary research on the intersections of mental health and HIV.

Developed as a complement to the clinic registry, the CHARM community survey was founded to amass a database of people with an increased susceptibility for HIV acquisition. Although the database is composed of individuals with varying HIV statuses, the goal of the database is to serve as a general cross-study screener for CHARM affiliated researchers interested in exploring the relationship between mental health, health disparities, and HIV related risk behaviors among a population of HIV-negative or HIV-status unknown individuals in South Florida. Similar to the patient registry, participants who complete the brief CHARM community survey provide consent to be included in the database and be contacted for future research studies conducted by CHARM affiliated academics.

The CHARM Consent-to-Contact Databases: How Did We Use Them?

This paper focuses on authors’ experience of using these consent-to-contact databases to recruit Latino OAWH into a study focusing on using a health promotion intervention to reduce cardiometabolic risk, increase social interaction, and improve mental health outcomes (Jimenez, Weinstein, Batsis, under review). Originally, the plan was to recruit participants by directly visiting two public option HIV-care clinics in the Miami metro area. Since recruitment is a continuous process that approaches more of an art than a science, the study team initially planned to become a regular presence at these clinics so to work directly with doctors and nurses to identify potential participants based off the daily appointments. Although this approach would have helped to build trust among clinic staff and participants attending the clinic on a regular basis – two key components of an effective recruitment strategy (Jimenez & Czaja, 2015), it would have also been significantly more burdensome for clinic staff who are already overworked. However, once the PI became aware of the CHARM patient registry and community survey databases as tools to help affiliated mental health and HIV researchers easily access potential eligible participants with HIV, it became evident that using these consent-to-contact databases would revolutionize the pilot study’s recruitment process. Using the database as a tool for recruitment provided a more efficient use of study staff’s time as well as lessened the burden on our colleagues in the HIV clinics – an added bonus of this new recruitment approach.

To best support affiliated researchers studying the intersection between HIV and mental health, CHARM’s resource department requires all requests to include specific inclusion and exclusion criteria (e.g., age, sex, viral load levels, etc.) so that the database managers can create specifically tailored reports that best reflect the needs of the given research study. Based on the criteria provided to CHARM, the database managers were able to provide study staff with a detailed list of potential participants’ names and phone numbers to contact and recruit using an IRB approved phone script that fit our eligibility criteria. Additionally, since these databases are longitudinal and are continuously accruing new participants, the CHARM database managers periodically sent over additional names of potential participants reflective of our inclusion criteria.

Challenges and Strengths of Using the CHARM Consent-to-Contact Databases

Like with any new methodological approach, the study team faced logistical challenges navigating the consent-to-contact databases. Many participants represented in these two databases have significant levels of life instability (e.g., housing instability, poverty; Weinstein et al., under review) which may have led to an increased number of participants’ having either phone numbers that are no longer active or phone service that is currently unavailable due to insufficient funds – a phenomenon that is less of an immediate concern in the general population. While this barrier may have been alleviated if recruitment was done in person, the unreliability of participants’ phone numbers may have caused concerns for retention in the long term.

Putting aside any logistical and social challenges, these two consent-to-contact databases yielded significantly more facilitators to recruitment than barriers. First, since all the participants represented in these two databases have already indicated a willingness to be contacted for future research studies, selling them on the idea of enrolling in our research study was noticeably easier than if more established recruitment methods had been utilized. One of the more challenging aspects of recruitment, especially among older adults and other marginalized populations, is getting potential participants “on board” with not only the requirements of the research study at hand, but also with research in general. Staff tasked with recruitment often spend a significant amount of time building rapport, establishing trust, and convincing eligible individuals that participating in research is a worthwhile endeavor – a process that was shortened due to the organization of the consent-to-contact databases. The study staff were able to engage with additional study responsibilities with the time they earned from the ease and speed at which we were able to recruit participants.

Since all recruitment was done over the phone, the research staff was never present in the two HIV clinics or at other potential recruitment sites (e.g., community clinics, LGBTQ+ recreation centers, etc.) and therefore, were not a nuisance to the staff working at these sites. Although it would have been nice to begin to develop tangible relationships with the staff working at these clinics and organizations, the fact that the study staff did not inconvenience and further burden these already overworked staff members was another testament to this innovative recruitment approach.

Similarly, the fact that recruitment was conducted remotely rather than in person created a sense of privacy that we feel helped facilitate a successful recruitment experience for both participants and study staff. Research suggests that it may be awkward for people to talk to researchers engaged in recruitment, even in a clinic setting that they may know well (Jimenez & Czaja, 2015). When approached in a clinic or community setting, eligible participants may feel pressured, or burdened to engage in research even if they are not particularly interested. However, the fact that our recruitment strategies were inevitably conducted in a more private setting (via phone calls), participants had the ability to talk to us on their own time, in their own space, and at their own speed in ways that they may not have felt comfortable doing should recruitment have occurred in a more public setting.

Conclusions and Implications

Overall, the unique experience of using CHARM’s consent-to-contact databases to recruit older Latinx sexual minority men with HIV for our pilot health promotion intervention study was incredibly positive due to the ease and convenience it provided both research staff and potential eligible participants. Consent-to-contact databases like CHARM’s patient registry or community survey may be a particularly helpful recruitment tool for pilot studies. For smaller exploratory studies like ours, investigators are limited in the amount of time they have to recruit participants, and since these studies are smaller in nature by design, consent-to-contact databases become an appealing recruitment approach to achieve these goals. However, since consent-to-contact databases may vary in size, investigators should not necessarily rely solely on this approach to identify potential study participants, especially for larger observational studies or randomized control trials. Nonetheless, consent-to-contact databases can still be incredibly useful recruitment tool for researchers overseeing larger studies and should be utilized in conjunction with other more established recruitment methodologies.

As we mentioned prior, recruitment can often be costly – in both resources, time, and energy; therefore, using a consent-to-contact database recruitment approach is a more efficient way to maneuver a sometimes-complex research process. The fact that full reports based off study inclusion/exclusion criteria are pulled directly from these databases for recruitment teams saves precious time among research recruitment staff and provides an opportunity for their energy to be reapportioned elsewhere. Additionally, because these consent-to-contact databases are already composed of potential participants who have already consented to being contacted for future research, the recruitment process becomes that much more seamless since eligible participants have a more immediate sense of buy-in to the research study being presented to them.

Finally, as society continues to navigate a world with COVID-19, it is important for medical and behavioral health researchers to continue adapting our recruitment strategies to become more efficient while also prioritizing the needs of our participants. Many important research studies over the past 12 months have been unable to either initiate, continue, or disseminate their results due to the pandemic. As we look to the future, consent-to-contact databases may quickly become the gold standard for recruitment both during and post the COVID-19 pandemic due to the fact that this recruitment approach does not require any face-to-face contact between study staff and potential participants.