Conversations with the Latino/Hispanic Community
The legislation that authorized PCORI’s creation tells us to pay particular attention, as we fund research, to certain populations, including racial and ethnic minorities, women, and older people. After all, if we are to help patients and those who care for them make better-informed decisions about their healthcare options, we must consider potential differences among groups in the effectiveness of the various treatments and services.
This is why addressing disparities is one of our national research priorities. It’s also why we reach out to particular populations as we engage the broad healthcare community in the research we fund.
Focus on Hispanics/Latinos
One population of particular note is Hispanics/Latinos, the largest minority ethnic group in the United States and one of the fastest growing. Health disparities in the Hispanic/Latino population show up as high levels of diabetes, breast cancer, asthma, and some other diseases; unhealthy environmental exposures; and low health literacy.
To ensure that findings of the research we fund are relevant to this group, it is important that we engage Hispanic/Latino community members in planning and carrying out the research we support and disseminating the results. The value of this approach was underscored in a recent survey we commissioned exploring patients’ and caregivers’ willingness to participate in patient-centered research: Respondents who spoke mainly Spanish reported a disproportionally high level of distrust of researchers and also of concern that their own lack of research training would hinder their ability to contribute.
“I believe that PCORI could change the reality of the Latin/Hispanic population in the United States.” - Latina workshop participant
A Latina who attended a 2012 PCORI workshop suggested we hold meetings to explore how members of this community view their health and healthcare challenges. She said men and women might speak more freely of their concerns if we held two separate roundtables. So we did, with one for Latinas in April and another for Latinos in July.
Listening to “movers and shakers”
The roundtables gave us a chance to hear from a range of Hispanic/Latino healthcare professionals and patient advocates. One participant, looking around the room, described her roundtable as a gathering of “so many movers and shakers in the Latino community.”
"Unless you target the family and get them engaged, you won't get the follow-through." - Latino workshop participant
Although the women and men talked about their own particular concerns, many issues crossed gender lines. Both groups stressed the importance of cultural sensitivity in health communications and of working cooperatively with community health workers to improve health systems. They talked about lingering hesitation to take advantage of medical services, in part because of fears about immigration status or lack of insurance or other sources of payment. They noted that the care available in many areas is substandard.
Both groups also expressed concerns about health literacy in their communities and discussed the need for mental health assessments as a routine element of physician office visits. They also stressed a particular strength of their community: strong family ties. They noted that couples and families tend to stay together and care for each other into very old age. The Latinas, however, expressed concern about the shortage of care for such elderly people, especially the frail and chronically ill, and the lack of supportive services for caregivers. They pointed out the importance of the healthcare community directly addressing Latinas because they tend to make healthcare decisions for the family.
"We have felt researched 'on,' not researched 'with.'" - Latina workshop participant
Proposals for future research topics
The Latinas proposed that some future PCORI-funded research focus on lay health educators known as promotoras, who are widely used and highly regarded in Hispanic/Latino communities. They also suggested studying the pros and cons of using certified interpreters with non-English-speaking patients and comparing management of care for multiple chronic diseases among subgroups of Spanish speakers.
The Latino men raised additional issues, including concern about health problems, like asthma, related to environmental agents. They also pointed out the value of a support network including not only family but survivors of the disease being treated. One participant called attention to an especially vulnerable segment of the community: men who came to the United States without their families. This group suffers from loneliness, depression, and often the stress of working more than one job, suggesting opportunities to study the impact of support services on clinical outcomes, participants said.
Work in progress; next steps
The roundtables not only provided a chance for the participants to educate us but gave us the opportunity to point out that we already fund several projects focused on Hispanic/Latino health concerns. One project studies group-support approaches for Latina cancer survivors and their caregivers. Another measures the impact of three approaches to helping young-adult Latinas and parents of adolescent Latinas make decisions about the HPV vaccine. A third compares interventions for parents to improve mental health outcomes among Latino children. And a recently issued funding announcement seeks proposals to study treatment options among African Americans and Hispanics/Latinos with uncontrolled asthma.
Roundtable participants seemed to have found the discussions as useful for them as they were for us. When surveyed after the roundtables, more than 75 percent of the participants said they plan to either submit a research proposal or apply for an Engagement Award—or do both.
"We need practice-based evidence as well as evidence-based practice." - Latino workshop participant
We’re pleased that these roundtables provided us a window into the healthcare concerns of the Hispanic/Latino community. We also appreciated the opportunity to make the community aware of opportunities to engage with PCORI activities. We look forward to building on the connections we established as we seek to promote partnerships between patients and researchers and plan for the best ways to see that the results of our work get to those who can use the information to answer pressing questions about health.