Five point initiative: a community-informed bundled implementation strategy to address HIV in Black communities

Abstract

Background

Black individuals in the U.S. remain the most disproportionately impacted by new HIV diagnoses, represent the highest portion of individuals living with HIV, and have the highest morbidity rates. Structural inequities and historical oppression are the primary drivers. Such drivers limit access to HIV prevention tools that need to be delivered with culturally congruent and community-informed approaches.

Methods

The Five Point Initiative (FPI) is a community-informed bundled implementation strategy developed and piloted between September 2019 and March 2020 in Miami, Florida in communities heavily impacted by HIV. Key components of the strategy included community consultants/experts, five categories (hence the “Five Point”) of community businesses (e.g., corner stores, beauty supply stores, laundromats, mechanics, barbershops), local health organizations, an academic research program engrossed in community engaged research, and community residents who provided ongoing feedback throughout. Outcomes of FPI included (a) survey information (e.g., knowledge of and access to PrEP, barriers to care) and pilot data (acceptability and feasibility), (b) expansion of reach to Black individuals in HIV high impact zip codes in Miami, (c) insights on our bundled implementation strategy, (d) condom distribution, and (e) HIV testing.

Results

Over the course of six months FPI carried out 10 outreach events, partnered with 13 community businesses and 5 health organizations, engaged 677 community residents, collected health information via a survey, distributed 12,434 condoms, provided information on PrEP, and offered voluntary HIV testing (131 completed). FPI’s ability to reach residents who are not being reached (e.g., 68.8% never heard of PrEP, 8% no HIV testing ever, 65.9% no primary care provider), positive feedback from residents (e.g., 70% very satisfied, 21% satisfied; 62% strongly agree and 25% agree they would participate again) and qualitative interviews with businesses provide evidence of acceptability and feasibility. Further, survey data provided insights on factors such as socio-demographics, discrimination experiences, barriers to care, social-structural factors, physical and sexual health, and mental health and substance use.

Conclusions

The FPI bundled implementation strategy shows promise to deliver health prevention/intervention for HIV and other health conditions to communities facing health inequities and for whom the current system for delivering care is insufficient.

Introduction

Black individuals remain the most disproportionately impacted racial group by HIV in the United States. In 2019, Black persons represented 42% of individuals newly diagnosed with HIV and in 2018 41% of individuals living with HIV [1]. This disparity is linked to structural factors including racism, heterosexism, poverty, HIV stigma, harmful laws/policies, lack of access to adequate and culturally competent physical/mental health care, trauma/violence, unaddressed mental health struggles, and underutilization of community-based approaches to offset some barriers to access [2,3,4,5,6,7,8,9]. These issues are evident in Miami, FL which continues to rank # 1 among U.S. cities in terms of new HIV diagnoses and suboptimal outcomes along the treatment cascade (e.g., number of people living with HIV engaged in care, retained in care, and who has HIV viral suppression) [10]. While Black individuals make up 16% of the population in Miami they account for 30% of new HIV diagnoses with 1 in 31 Black individuals living with HIV in Miami [1]. There is a core prerequisite that is needed in order to fulfill the four pillars (diagnose, treat, prevent, and respond) of the Ending the HIV Epidemic (EHE) initiative – that is the ability to reach and engage. HIV health equity scholars challenge the notion that Black individuals placed at risk for living with HIV are “hard to reach” and call for successful approaches in reaching Black communities [11,12,13]. One approach has been partnering with venues frequently accessed within Black communities [14,15,16,17]. For instance, health departments have partnered with barbershops and hair salons [18] and research supports the feasibility of conducting intervention studies there [14]. Similarly, churches have shown promise in increasing HIV testing levels [11, 18,19,20]. However churches sometimes struggle to (a) promote sexual health within the confines of their views on sex and sexuality [21] and (b) engage younger generations and those marginalized by heterosexism and cisgenderism [22].

Going beyond churches, public parks, homeless shelters, and bars with mobile HIV testing sites have caused an increase in HIV testing, many of which were people who had never previously tested [20, 23, 24]. Venue-based testing also provides rapid results and more guaranteed receipt of results  [25, 26]. Further, rapid testing used at community sites detect and diagnose HIV at an earlier stage than non-rapid tests many clinics/health centers use  [27]. Increasing knowledge about pre-exposure prophylaxis (PrEP) and access to PrEP via venues also has the potential to lower rates of HIV transmission. Black individuals are less likely to know about PrEP, have discussed PrEP with a provider, or utilized PrEP [28,29,30]. However, recent mobile efforts to encourage PrEP usage and continuation have increased PrEP adherence [19].

For community and venue-based efforts we can leverage data from departments of public health to focus on highly impacted zip codes. Dynamic HIV transmission maps also suggest areas in need of HIV outreach programs [31]. Lastly, local expertise can identify venues impacted by factors linked to HIV transmission (e.g. substance use, sex work, homelessness) [32]. In addition, outreach efforts by community-based organizations tend to succeed with goals of increasing HIV testing, education, and treatment [23, 33, 34]. For academic and community partnerships the use of community-based participatory research (CBPR) is central in identifying needs, locally relevant strategies, and promoting HIV testing and education [35,36,37].

Given the necessity to address HIV health inequities faced by Black individuals in Miami, FL, innovative strategies that build on existing literature and harness local resources and community partnerships are needed. As such, the Five Point Initiative (FPI) was developed in close collaboration with community experts and piloted to assess preliminary acceptability and feasibility and to improve education and knowledge about HIV prevention and treatment, access to HIV testing, PrEP information, and condom usage.

Methods

Overview of the Five Point Initiative Model

The Five Point Initiative pilot (1) partnered with five categories of businesses that Black individuals may frequent (i.e., corner/grocery stores, laundromats, salon and beauty supply stores, barbershops, and car service providers) in Miami Dade zip codes with the highest number of Black individuals living with HIV (2) closely collaborated with community health organizations funded by the Centers for Disease Control and Prevention (CDC), Health Resources and Services Administration (HRSA), and/or Substance Abuse and Mental Health Services Administration (SAMHSA) and (3) hosted outreach events in which community members complete a brief electronic survey in exchange for a service/voucher (e.g. free laundry wash and dry) at a venue with the cost being covered for by research funding and are offered HIV/STI voluntary counseling and testing on a mobile health unit, PrEP information, and condoms. Outcomes of the Five Point Initiative included (a) survey information (e.g. knowledge of and access to PrEP, barriers to care) and pilot data (acceptability and feasibility), (b) reach of Black individuals in HIV high impact zip codes in Miami who are not being reached by traditional approaches in terms of HIV prevention/treatment efforts as evidenced by lack of knowledge of PrEP and HIV testing, (c) insights from residents and business partners on our local implementation strategy, (d) condom distribution, and (e) HIV testing. As depicted (see Fig. 1), there were five key partnerships/voices and five categories of businesses with efforts targeting HIV high impact zip codes for Black individuals in Miami, FL.

Fig. 1

Five point initiative components and context

Community consultants

Community consultants were central to the Five Point Initiative model and bring decades of expertise. One consultant had over twenty years of experience working in Black communities on HIV prevention and treatment, LGBTQ+ advocacy, harm reduction for substance use, increasing access to resources, grief counseling, and operating a faith-based ministry. The second consultant had over twenty years of experience establishing/directing nonprofits to advocate for women and girls' sexual health and mobilizing Black women in the fight against HIV. These consultants provided key insights for planning, executing, and improving FPI, recruited businesses/venues for partnerships, and assisted with outreach events. To recruit businesses falling within the categories noted below, the consultants approached businesses (many of which they had pre-existing connections with) located in the identified HIV high impact zip codes that serve and attract Black residents and discussed FPI. Having an intimate understanding of the businesses and locations consultants also helped to inform the potential days/times for the events to maximize resident engagement.

Community businesses

Through conversations upon initial recruitment, ongoing dialogue to plan an outreach event, and exit interviews, community businesses provided insights to make the events successful and improve the approach. The five types of businesses were corner/grocery stores, laundromats, salon and beauty supply stores, barbershops, and car service providers (e.g., car wash, gas station, mechanic). Businesses distributed flyers to patrons weeks leading up to the event. The $20 vouchers provided to participants were used to purchase products or services from the businesses and generated revenue. Based on interest, neighboring businesses were simultaneously partnered with during one event.

Community health organizations

To work collectively with organizations with a shared mission to address HIV, FPI partnered with community health organizations (CHO) including clinics, local HIV prevention centers, and the department of health to provide mobile HIV testing and PrEP screening and referrals when indicated.

Residents

All community residents (18 years and older) were invited to participate during outreach events as they visited the businesses or passed nearby. Consent was obtained verbally (approved by University of Miami Institutional Review Board) and description of the research study and requirements were provided in written form and orally to participants. Residents who chose to participate completed a survey, were offered HIV testing, information on PrEP, and condoms, and received a business voucher. Residents provided satisfaction ratings, feedback, and insights as they participated and via questions at the end of the survey.

Strengthening Health through Innovation and Engagement (SHINE) research program

The research program carriers out a suite of projects (a) addressing inequities at the intersection of HIV and mental health especially among individuals minoritized due to racism (e.g., Blacks/African Americans), sexism, heterosexism, and cisgenderism and (b) engaging community members and stakeholders in research. The research team, reflective of the racial/ethnic communities most impacted by HIV, consists of the principal investigator/director, research staff, postdoctoral and doctoral students in psychology and public health, and undergraduate students. Research staff played a key role in coordinating the event logistics, all team members assisted with participant engagement at events, and oversight was provided by the principal investigator. In addition, a weekly meeting and debrief was conducted with the research team and community consultants.

HIV High-Impact Zip Codes

The piloting of FPI focused on five zip codes and Black communities in Miami, FL where HIV prevalence is high. The goal was to conduct an event at each of the five types of venues within these zip codes.

Survey administered to residents via RedCAP [38]

Residents were given the option to complete the survey on their own (using smartphone or a tablet/iPad issued by the team) or have it read by a team member. The survey was available in English, Spanish, and Haitian Creole and captured information on demographics, life experiences, mental health, substance use, physical health, sexual health, and event feedback.

Socio-demographics

Twelve questions asked about participant age, birth country, work status, household income, educational level, housing, gender identity, sex assigned at birth, relationship status, sexual orientation, racial identity, and ethnic identity.

HIV status

Participants were asked to select one of the following regarding HIV status: HIV-positive detectable viral load, HIV-positive undetectable viral load, HIV-positive I don't know my viral load, HIV-negative, or I don't know.

Housing stability/food insecurity

Two items were used from the United States Department of Agriculture’s 18-item scale [39] to determine food insecurity and hunger (e.g., “In the past 12 months, the food I bought just didn’t last and I didn’t have money to get more”).

Child care needs

From a national study on affordable childcare [40] we used two items (e.g., “How serious of a problem is finding quality, affordable childcare in your area?”).

Overall health

Participants were asked to rate their own health choosing from: poor, fair, good, very good, or excellent. In addition, participants were asked if they had a primary care doctor.

Mental health

From the Patient Health Questionnaire (PHQ-9) [41, 42], we used four items to assess the participant's mood from the past two weeks (e.g. feeling down, depressed, or hopeless). In addition, participants were asked one question on self-esteem (i.e., I have high self-esteem) and one on trauma) [43].

Substance use

Two questions asked about alcohol use and drug use: “How many times in the past year have you had four or more drinks in a day?” and “How many times in the past year have you used a drug or used a prescription medication for non-medical reasons?”

Sexual health and health behaviors

Participants were asked 11 questions (varied based on HIV status and branching logic) about sexual health and health behaviors. Questions were: When was the last time you were tested for HIV? Have you ever spoken to a doctor about HIV? Have you had any sex without a condom in the past 3-months? Are you currently prescribed HIV medication?, In the last 4 weeks, how good a job did you do at taking your HIV medicine in the way you were supposed to? Have you ever heard of PrEP?, Have you ever spoken to a healthcare provider about getting PrEP?, Are you currently prescribed PrEP?, On a scale from 0-10, how important is it to you to start PrEP?, On a scale from 0-10, how confident are you that you will start using PrEP?, [30] and In the last 4 weeks, how good a job did you do at taking [PrEP] in the way you were supposed to?

Everyday discrimination

Five items were used from the Everyday Discrimination Scale  [44] ( e.g., “You are treated with less courtesy or respect than other people”, “you are threatened or harassed”), which asks participants to note in their day-to-day life whether they have experienced discrimination, how frequently (e.g., almost every day, at least once a week), and to indicate the identity that was targeted (e.g., race, gender).

Barriers to medical and mental healthcare

Eight items were adapted from Heckman’s scale on barriers to care among people living with HIV [45] and assessed the following barriers for people living with and without HIV: financial reasons, HIV stigma, lack of transportation, housing, language spoken, competency of providers, shortage of mental health providers, and distance to the facilities.

Medical mistrust

Five items by LaVeist [46] on mistrust for medical facilities and personnel were used (e.g., “Hospitals have sometimes done harmful experiments on patients without their knowledge”).

Community evaluation feedback

Eight questions captured resident’s satisfaction, where residents heard about the event, activities they engaged in (e.g., testing), whether they would participate in another activity, what aspects should be in future events (e.g., voucher), and their thoughts about the event.

Exit interview with businesses

Manager/owners were asked five questions on satisfaction with the event and planning, interest in collaborating in future events, areas for improvement, and overall comments.

Statistical analyses

SPSS version 28 was used to perform all statistical analyses. All 654 participants who completed surveys were included in the quantitative analyses. Descriptive statistics (e.g., mean, standard deviation, frequencies) were computed for all quantitative variables. The brief semi-structured interviews with business partners were reviewed for common themes by two team members under the guidance of the PI.

Results

Between September 2019 and March 2020 (paused due to COVID-19) in four HIV high impact zip codes in Miami, FL, 10 outreach events were conducted in collaboration with 13 businesses and 5 health organizations. In total 677 residents were engaged, 654 people completed surveys, 131 volunteered for HIV testing, and 12,434 condoms were distributed. We partnered with 4 corner/food stores, 3 barbershops, 2 beauty supply stores/ hair salons, 1 laundromat, and 3 businesses (1 feminine health and 2 clothing/accessories) that are categorized as “Other”. In general, the corner/food store events had the highest average for residents who completed surveys and testing per event (averaged 93 surveys and 18 tests across 4 events), followed by the laundromat (averaged 49 surveys and 19 tests for 1 event), barber/salon/beauty (averaged 42 surveys and 9 tests across 3 events), and the other category (averaged 22 surveys and 2 tests).

Socio-demographics of residents

Among participants 74.1% were born in the United States, with 93.1% speaking English as their primary language (see Table 1). Median age was 42 years old, 53.7% identified as female, 42.4 % as male, 0.2% transgender, and 0.6% percent as gender non-conforming. The majority (80.7%) identified as heterosexual and 12.3% identified as LGBQ+. Participants largely identified as Black/African American (84.1%) with 35% being Afro-Caribbean Black (non-Haitian) and 13% Haitian/Haitian American. Household income was less than $5000 a year for 22% and 41.9% were working full time.

Table 1 Demographics

Discrimination, barriers to care, and other social-structural factors

A high percentage of participants reported experiencing discrimination almost every day: 50.4% receive poorer service than other people at restaurants, 65.1% people act as if they are afraid of you, 71.4% are threatened or harassed (see Table 2) with various identities as the target of discrimination (gender 48.4%; gender identity 9.7%; race/ethnicity 78.8%; sexual orientation 4.7%; living with HIV 6.7%). Participants endorsed moderate levels of medical mistrust (avg = 3.13). Residents also reported barriers to accessing healthcare services they need: 18.9% long distances 23.6% transportation, 20.4% providers who do not speak their language, 38.3% financial resources, 35.6% lack of affordable housing, and 36.9% stigma against persons living with HIV. Food security was an issue with 40.7% reporting that “often” food bought did not last and they had no money to get more. Participants reported an average of 2.33 children and 21.8% found it somewhat difficult or very difficult to find affordable childcare. Lastly, 26.8% reported incarceration history.

Table 2 Discrimination, barriers to care and other social-structural factors

Physical and sexual health

In rating their general health, 35.8% selected “good” and 24.8% rated poor/fair (see Table 3). Among participants 65.90% did not have a primary care physician. Regarding HIV status and testing, 5.1% reported living with HIV and adhering to their HIV medication (.06 % poor, 22% fair, .06 % good, .17 % very good, 50% excellent), 8.4% did not know their HIV status, 17.1% had been tested for HIV over 1 year ago, and 8.8% had never been tested for HIV in their lifetime. For condom usage, 21.6% of participants had sex without a condom one or two times in the past 3 months. In regards to PrEP, 66.8% of participants had never heard of PrEP before and both their views on how important it was to start PrEP (avg = 3.37) and their confidence in starting PrEP were low (avg = 2.59).

Table 3 Physical and sexual health

Mental health and substance use

Trauma exposure was high with 39.1% having witnessed, experienced, or dealt with a traumatic event in their lifetime (see Table 4). In the past two weeks many participants reported several days or more of feeling anxious (37%) and depressed/hopeless (35.7%). Substance use varied with most participants reporting never having 4 or more alcoholic drinks in one day (52.4%) or using drugs in the past year (79.9%). However, when asked on a scale ranging from 1 (not very true of me) to 5 (very true of me) about self-esteem participants reported high self-esteem (avg = 3.97).

Table 4 Mental health and substance use

Evaluation of community event

Participants were very satisfied with the FPI events and indicated that they would participate in future events (see Table 5). For instance, 70% were very satisfied, 21% were satisfied, 62% strongly agreed, and 25% agreed they would participate again. Participants also indicated aspects of the event that should be included in the future, time they would be willing to spend engaging at the business location, and activities they would be willing to do in this location in exchange for a voucher (e.g., 60% would get tested for HIV/STI, 44% would get a prescription for HIV prevention/treatment). Participants’ responses to an open-ended question about their thoughts of the event were also overwhelmingly positive with responses like, “It's good because people are trying to help the community and most people don't care about the hood, and it's showing that people can do good” and “I feel like this is very helpful and informative. The free HIV testing is very helpful along with the information and the statistics that was provided to me. The free wash is also helpful for those that aren't financially stable and able to wash their clothes. I would definitely participate in the next event.” Most participants heard about the event through friends or family (36.2%).

Table 5 Residents evaluation of community event

Exit interview with business

All thirteen businesses completed the exit interviews and seven common themes were identified (see Table 6): (1) organization and planning, (2) increase in daily revenue and customers (3) increase in HIV awareness and education, (4) interest in future collaboration, (5) satisfaction with the team, (6) improvements, and (7) community enrichment. Six out of the thirteen business owners/managers mentioned an increase in daily revenue and customers served and they commended the team’s positive interactions with their customers. Some owners noted that events like these are rare (e.g., “You know nobody ever did. I mean unless you go to a doctor.”). In addition, all business owners were interested in collaborating in the future with eleven of the participants replying “definitely” and one replying “absolutely”.

Table 6 Illustrative quotes from exit interview with businesses

Discussion

The Five Point Initiative is an innovative bundled implementation strategy for reaching and engaging Black communities around sexual health and HIV testing and prevention. FPI centers the expertise of community consultants with in-depth knowledge of the local communities and venues, partners with community venues that are frequented by Black residents in a manner that not only asks for altruism but increases their daily revenue, leverages the resources and partnerships with community health organizations, listens throughout interactions with residents and businesses for ways to improve, and is carried out with the support and coordination of an academic partner and research program that centers equity and is committed to addressing HIV inequities. In piloting FPI important data was gathered that supports feasibility and acceptability and will help us to better understand the interplay between neighborhoods, social-structural factors, physical and sexual health, and mental health. However, perhaps the most valued aspect by residents and partners was not the data, but the services, information, and resources delivered during the outreach events.

Within six months almost 700 residents were engaged and the success is consistent with literature indicating that venue-based approaches, using CBPR elements, done in collaboration with local businesses and health organizations (/mobile units), and leveraging local expertise can be successful in expanding the reach of HIV prevention efforts to minoritized communities [23, 33,34,35,36,37, 47, 48]. Further, the feedback from both residents and community businesses were positive with responses indicating that this approach to health promotion (coming to the venues, providing a voucher, team that racially/ethnically reflects the communities) is something they appreciated and had not seen before. As a result, all businesses noted that they would partner again for FPI and the majority of residents would participate again. All residents were educated about PrEP, provided condoms, and offered voluntary HIV testing; however, only about one fifth of residents volunteered to get tested for HIV suggesting that requiring HIV testing for the voucher in FPI (present in ongoing work) would lead to a higher number of residents testing for HIV.

Survey data on sociodemographics, discrimination, barriers to care, other social-structural elements, physical and sexual health, and mental health and substance use highlighted experiences and issues being faced by residents. Socio-demographic findings indicate that FPI is able to reach diverse Black residents for HIV prevention efforts. A significant percent of residents reported facing everyday discrimination (including threats and harassment) with various identities being targeted (race/ethnicity, gender identity, sexual orientation, and HIV status) [2,3,4]. Many reported barriers to care (e.g. transportation, finance, housing, and stigma), moderate levels of medical mistrust, and food insecurity. These barriers to care affirm the need to reach residents where they reside to deliver health promotion and care. Also given ongoing racism, the presence of a majority Black team and community consultants (known in the communities) at the outreach may have offset initial hesitations by residents, created a welcoming atmosphere, and enhanced trust. Lastly, the vouchers when partnering with food venues was likely an attractive incentive in the context of food insecurity and food venues had the highest average engagement of residents compared to other businesses partnered with.

In terms of physical and sexual health, survey responses highlighted that the majority of residents did not have a primary care provider, some had never been tested for HIV in their lifetime, a significant portion had condomless sex within the past three months, and most had never heard of PrEP. Our findings reiterate that Black residents are not being adequately reached with HIV biomedical prevention options [49, 50]. Fortunately post survey completion FPI provided information about PrEP and how residents can access it. Findings also indicate that mental health interventions and resources are needed as well as a nuanced understanding of what mental health struggles may be most prevalent.

There are additional implications. First, having paid community consultants from local communities is pivotal in building community partnerships and having lived expertise on the local context. Second, FPI may be used to target other health issues (e.g., screenings, vaccines) and provide immediate access to PrEP. For instance, community health partners on mobile units with appropriate credentials (e.g., nurse practitioner) can screen participants for PrEP and provide same day prescriptions. Third, weekly debriefs among the team (e.g., community consultants, research team), exit interviews with businesses, and formal and casual feedback from residents suggested decreasing the number of survey questions, increasing the number of mobile health units available when a large number of residents are anticipated, and advertising for the event at least a month or more in advance. Fourth, examining community reach and testing trends of the community health organizations partnered with may indicate if FPI participation expands their reach. Further, given that specific geographical locations were targeted, combining census data on neighborhood factors with collected data may provide insights. Lastly, a large-scale cluster randomization research project is needed to assess the effectiveness of the FPI bundled implementation strategy.

In summary, the Five Point Initiative is a promising bundled implementation strategy. Findings provide evidence of feasibility and acceptability with widespread enthusiasm from businesses and residents as well as data highlighting inequities facing primarily Black residents in HIV high impact communities. Gone are the days when major hospitals should be viewed as the home of prevention and care, individuals and especially those who have historically been neglected by such institutions need to be met in their communities and at places they frequent using promising approaches.