Community-Based Family Health History Education: The Role of State Health Agencies in Engaging Medically Underserved Populations in Understanding Genomics and Risk of Chronic Disease

Abstract

Although family health history (FHH) collection has been recognized as an influential method for assessing a person’s risk of chronic disease, studies have shown that people who are low-income, from racial and ethnic minorities, and poorly educated are less likely to collect their FHH or share it with a medical professional. Programs to raise public awareness about the importance of FHH have conventionally targeted patients in primary care clinics or in the general community, but few efforts have been made to coordinate educational efforts across settings. This paper describes a project by the Connecticut Department of Public Health’s Genomics Office to disseminate training materials about FHH as broadly as possible, by engaging partners in multiple settings: a local health department, a community health center, and two advocacy organizations that serve minority and immigrant populations. We used a mixed methods program evaluation to examine the efficacy of the FHH program and to assess barriers in integrating it into the groups’ regular programming. Our findings highlight how a state health department can promote FHH education among underserved communities.

Understanding the potential of state-based public health genomics programs to mitigate disparities in access to clinical genetic services

“…In response, they developed new outreach programs with community-based organizations that served low-income patient populations and racial and ethnic minorities. 25 Similarly, when Utah launched their program in 2003, SHA staff recognized the difficulties of accessing genetic services in rural communities. They noted that not only are rural communities less likely to be served by clinical genetic services, in part because of distance from academic medical centers, but the people who live there also tend to be low income and have low levels of educational attainment.…”

“…For example, although public health data typically portray Asians as very healthy, this masks specific experiences of Cambodians, who are, as this partner claimed, the “the sickest in the country,” (CT Interview 27, 2015). Connecticut’s staff thus tailored a program to this country-specific group as part of an oral history initiative, 25 and worked to address the difficulty of collecting FHH on people whose family members may have died in the Cambodian genocide. In this case, neither a high-risk strategy nor a population-level strategy alone could have addressed the health disparities of Cambodian immigrants; instead, a public health repertoire sensitive to the historical and social vulnerabilities of this group was important to recognizing their unique needs.…”

“…30 , 31 Similarly, Connecticut’s SHA worked with four community groups to disseminate tailored FHH information. 25 In Utah, one collaborator described the Salt Lake City school district as “minority majority” because some schools are “sixty-five percent Hispanic Latino and the rest of it ‘other.’ There are schools with a hundred and two languages spoken” (UT Interview 8, 2013). Accordingly, in partnership with the SHA staff, collaborators consulted with Pacific Island and Hispanic communities to develop a culturally relevant FHH school curriculum that would engage a diverse student body and their families.…”

Blending Insights from Implementation Science and the Social Sciences to Mitigate Inequities in Screening for Hereditary Cancer Syndromes

“…Partnerships that span service settings and draw in unusual partners can advance implementation science and basic research in multiple ways. For example, several state public health agencies have been working to integrate genomics into their chronic disease prevention programs over the past decade, with modest funding from the Centers for Disease Control and Prevention (CDC) [65,66,67,68]. Academic researchers could advance the field of public health genomics greatly by partnering with these agencies to evaluate their work and demonstrate the impact and the reach of these projects.…”

“…Several projects have sought to make the benefits of FHH screening more widely available. In 2014, the Connecticut Department of Public Health (Connecticut-DPH) analyzed data from the Behavioral Risk Factor Surveillance System (a statewide, random-digit dial survey on self-reported health habits) and recognized that in their state, low-income patients and racial/ethnic minorities were less likely to know their FHH and share it with a provider [67]. They partnered with four agencies to bring FHH education into communities: a local health department, a federally-qualified community health center, and two community organizations that provide health and social services to specific racial or ethnic minorities.…”