Two presentations at the workshop looked in more detail at specific examples of successful efforts to engage racial and ethnic minority communities in digital health strategies. One considered the use of technologies in a Latina immigrant community in New Mexico; the other focused on men who have sex with men (MSM) in the Detroit metropolitan area. Though the targeted populations were quite different, both demonstrated how technology-based interventions can reach communities in ways that more traditional interventions cannot.
Tamar Ginossar, who teaches courses in health communication at the University of New Mexico, offered a specific example of how partnerships between universities and local communities can reduce health disparities. She works with a community group called La Comunidad Habla, Spanish for “the community speaks.” The goal of the partnership is to reduce disparities in a Latina immigrant community, but the same model can be applied to similar collaborations in many different community settings, Ginossar said.
New Mexico is a majority minority state, with Latinos comprising 47 percent of the population, followed by non-Hispanic whites and Native Americans. The state has one of the highest poverty rates in the nation, which in turn leads to health disparities. It also has the lowest rate of broadband access at home.
La Comunidad Habla works predominantly in Southeast Albuquerque, which is close to the University of New Mexico. Known as the international district in recognition of its diversity, it is the most ethnically diverse area in the state, in part because of its central location and relatively affordable housing. Up to 80 percent of the properties are rentals, “which makes building social capital difficult,” said Ginossar, “because people do not own their homes, and they move in and out of the area.”
Despite increases in online access, the digital divide persists, she continued. Latinos in particular are digitally marginalized in access to information technologies, in having a lower representation in the information technology workforce, and in their lack of culturally relevant content on the Web. This digital divide has marginalizing social and economic effects. “To make informed decision making, we need access to credible information,” Ginossar said, adding, “We know from the general population that people with access to health information online report much better health outcomes. Whom are we leaving out?”
Providing online access to digitally marginalized communities is necessary but not sufficient to bridge the digital divide, she said. Culturally appropriate interventions are needed as well to meet the information needs of these communities, said Ginossar, and these interventions need to provide support and culturally appropriate, low-literacy-level content.
Created in 2002 as a community outreach project of the Young Children’s Health Center, a University of New Mexico pediatric clinic, La Comunidad Habla was founded as a community digital media group to provide women with technological and health advocacy leadership in the community (Ginossar and Nelson, 2010a,b). It began with evening computer classes in Spanish for women, with child care provided, “which is a crucial component,” Ginossar emphasized. The project provided opportuni-
ties for community members to access health information and technology, in part through a bilingual online health care resource directory (http://www.mycommunitynm.org). With relatively few financial resources, it reached and trained more than 1,000 community members and providers.
When Ginossar began working with the group, she was very interested in how people were using the Internet for health information seeking. She found that community members were particularly interested in the behavioral health of children. “A lot of parents have questions about the development and behavior of children in all communities. There is still a lot of stigma attached to it and not enough services to access,” she explained. A literature review revealed that most children who need evaluation and treatment for behavioral health and developmental disorders do not receive it. Children are typically diagnosed after they enter school, but interventions are often most effective in younger children. “We are missing the crucial years of early intervention,” Ginossar said.
The scientific literature also showed that the less stigma parents feel about accessing mental health care for their children and the more knowledge they have about early childhood development and behavior, the more likely they are to access services. To reduce stigma and build knowledge, Ginossar and her colleagues created a collaboration with mental health experts that had two objectives: first, to examine low-income Latina community members’ information needs and information sources regarding early childhood behavior and development; second, to develop educational outreach to community members and key stakeholders. Drawing on the results of focus groups conducted both in English and in Spanish, the collaboration created educational materials, including an illustrated story, or historieta, that combined education and entertainment.
Ginossar ended by listing some of the future research goals for the collaboration. One is to create a larger intervention to meet parental information needs and decrease the digital divide. This larger intervention could be systematically examined—for example, Ginossar said that she was particularly interested in the differences and similarities between digital and print media, because the community organizations were using both.
The collaboration wants to build additional collaborations with health care providers in the community. It also wants to work with day care centers in the community to reach parents and caretakers. “Day care in this community can be a great place to have interventions, and they are very interested in that because of their needs for accreditation,” Ginossaur added.
Challenges include the lack of continuous funding, the fact that local heroes move, and continually changing models and technology. Also, community leaders continue to face various barriers, including a lack of broadband access at home.
Tensions can arise between the different requirements of community organizations and academia, Ginossar acknowledged. A lot of what goes on in academia is not relevant to communities or can take a long time to explain. Community-based participatory research involves two cultures coming together, which requires communication about expectations. For example, academics often move from project to project, which is inconsistent with the cultures of communities. But for academics to avoid what has been called “helicopter research,” they need the policy and institutional support to remain involved with communities even after the funding is gone. Ginossar said that she has been fortunate to work for an institution that appreciates community-based participatory research and the time it takes.
Finally, Ginossar laid out a potential model for community–academic collaborations:
- Identify content area with the community.
- Review the literature to support the need.
- Cocreate research questions with the community.
- Build on community models.
- Create multidisciplinary collaborations with health care providers and additional stakeholders.
- Identify funding sources.
- Write grant proposals.
- Write additional grant proposals.
- Hope that your community partners can wait.
Three-quarters of Michigan’s HIV/AIDS cases are in Southeast Michigan, with more than 60 percent of the HIV cases in the Detroit Metro Area accounted for by MSM. Furthermore, six of the nine counties in Southeast Michigan account for the majority of the new cases of chlamydia, gonorrhea, and primary and secondary syphilis. Jimena Loveluck, president/CEO of the HIV/AIDS Resource Center (HARC), and Jose Bauermeister, associate professor of health behavior and health education and the director of the Center for Sexuality and Health Disparities (SexLab) at the University of Michigan School of Public Health, described the tailored Web-based technology they have developed to attack these problems by encouraging HIV and sexually transmitted infection (STI) testing among young MSM between the ages of 15 and 24 years.
for adolescent heterosexual populations. The adaptation acknowledged the need to address structural barriers affecting service efforts aimed toward HIV/STI prevention and care among young men who have sex with men (YMSM), and the importance of using technology to reach this population. The intervention was developed through a community-based participatory research approach and was informed by existing mixed-methods data focused on YMSM in Southeast Michigan.
Loveluck briefly laid out some of the principles on which community-based participatory research (CBPR) is based (Israel et al., 1998). CBPR recognizes the community as a unit of identity, builds on strengths and resources within the community, facilitates collaborative and equitable involvement of all partners in all phases of the research, and integrates knowledge and intervention for mutual benefit of all partners. Speaking as a program director, Loveluck said “We have been involved in everything from designing the intervention and study tools to helping to think about coding of data. We have learned a lot along the process—and not just me as the director of the organization but many staff.”
In the case of Get Connected, CBPR focuses on issues of concern to the community by addressing structural vulnerability among YMSM of color. It also enables the community to use data to advocate for change. In addition, the program has given HARC an opportunity to showcase its work on a national and even an international scale. As Loveluck said in response to a question, “We have to hold our academic institutions accountable for sharing the resources and providing some of the capacity building in communities. . . . Academic institutions really want to work with community partners, but that has to be done in an equal manner.”
Get Connected has looked at both HIV vulnerability and protective factors. The barriers to accessing HIV services include cost, transportation to services, age-related barriers, beliefs and risk perceptions, the perceived credibility and competence of providers, medical mistrust, the difficulty of navigating services, and discrimination. To overcome these barriers, Get Connected brought together a variety of groups, including the SexLab at the University of Michigan, the Center for Health and Communications Research at the University of Michigan, a community advisory board made up of service providers, and a youth advisory board, which helped tailor the messages used in the program. Another component of the program was “secret shoppers” (Bauermeister et al., 2015b)—two men per site who went through the process of HIV and STI testing to rate or evaluate the sites based on a set of criteria.
These criteria included structural characteristics, such as the hours a clinic was open, whether it was close to public transportation, how long testing would take, and information about insurance and fee scales. The evaluators also considered such questions as whether the site was youth
friendly, whether it was LGBTQ (lesbian, gay, bisexual, transgender, queer) inclusive, whether it was sex positive in terms of its counseling and messages, and whether it had a focus on goal setting and diversity. “Nobody has stopped to ask what it is like for a young man to go get tested in these settings,” Bauermeister pointed out, adding “The trust and respect of the users themselves, and making sure that they are also making decisions, are vital.”
Bauermeister described the randomized controlled trial conducted as part of the research project that involved 130 young men in Southeast Michigan who had engaged in sex with a male partner in the past 6 months. One group (the tailored intervention condition) received content developed in the Get Connected project, which is tailored to reflect age, race/ethnicity, sexual identity, history of HIV and STI testing, barriers to testing (such as homelessness, residential instability, or discrimination), sources of support, and personal values. They then received information about the locations of test sites. The comparison condition only received the testing directory. “We thought it would be unethical to not give young men a chance to find out where to get tested,” Bauermeister said regarding the inclusion of a testing directory as the comparison group, adding “Even though it makes it harder for us scientifically to find the difference between the arms, from a public health and practice perspective, it is the right thing to do.”
Both the tailored site and the test locator conditions had very high satisfaction and acceptability by young men. In addition, 30 days after they had received the intervention, more than 30 percent of the men who received the tailored content had been tested for HIV and/or STIs, “which is huge,” according to Bauermeister.1 The testing identified one previously unknown HIV case and two previously unknown STI cases that were treated. In addition, four HIV-positive participants reported visiting their care providers after participating in the intervention.
A particularly interesting result was a reduction in the number of partners among men in the intervention in the following 30 days. Even among those who did not get tested before the 30-day follow-up, there were clinically meaningful reductions in perceived barriers to testing and fears about getting tested, along with increased urgency to get tested and to talk with partners about testing or delaying sex until each person’s status was known.
At the time of the workshop, Get Connected was seeking funding for a demonstration project to expand the program to the Atlanta Metro and the Minneapolis–St. Paul regions. It also was planning to switch from secret shoppers to a Yelp-like review system, collect a greater number of time points postintervention, shift the site more toward videos and interactivity than text, and work to extend it from a mobile-friendly to a mobile-based system.
Bauermeister concluded with several lessons drawn from the experi-
1 In the control group, 28 percent of the men reported getting tested for HIV.
ences with Get Connected. CBPR can be a way of connecting technology and community, but the community needs to be integral to the process. Specific areas of HIV education can be targeted in outreach and testing efforts with providers and clients. And YMSM can be empowered to understand and navigate their testing and counseling sessions.
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