Health disparities (HD) are preventable differences in disease progression and outcomes that disproportionately impact certain populations. HD are costly and preventable. Although many factors impact HD, racism is especially significant. In 2018, the economic burden of racial and ethnic health inequities in the United States was $450.8 billion.”75 African Americans (AAs) suffer disproportionately across most diseases compared to Whites.2,22 AAs have the highest death rate and shortest survival of any racial and ethnic group in the US across most types of cancers and other preventable diseases.3 The most prevalent common health disparity diseases in the AA community include diabetes, heart disease, high blood pressure, stroke, HIV, STDs/STIs, cancer, and cardiovascular disease, most of which can be prevented.1,2 More effective strategies for reducing the disproportionate burden that HD have on the AA community are needed. To reduce the disparities that exist, research must explore tools, resources, and skills that mitigate the negative consequences of HD and ultimately work to eliminate them entirely.
Current practices to address HD include preventative behaviors such screenings that inform proactive measures to prevent disease.1–3 Family Health History (FHH) tools are an effective way to promote screening and early detection, potentially preventing the onset of HD-affected diseases.2,23 FHH tools provide a structured way for individuals to identify and catalog the social, genetic, and environmental factors contributing to their own disease risk by collecting, recording, and sharing family health information.23,24 Family health, which reflects both inherited and acquired environmental factors, is one of the most important risk factors for many health disparity conditions including cancer, heart disease, cardiovascular disease, hypertension, diabetes and other chronic conditions.25–28
National and international scholars alike recognize the roles that FHHs plays in supporting tailored disease prevention.29 Understanding one’s FHH can motivate lifestyle changes, influence clinical interventions, enhance individual empowerment, and help to personalize medical care.23,30 National efforts, like those undertaken by the Pittsburg’s Center for Minority Health, recognize and suggest that one key mechanism in reducing HD in AA and other minority communities is to use FHHs.2 Although many FHH toolkits have been created to assist families in gathering FHH information, these tools, due to their design or the lens of the developer, tend to be catered to the general population, not accounting for the cultural and ethnic nuances, communication preferences, and health literacy levels of the AA community.4 A randomized trial showed that FHH tools were effective among AA, but recommended that the tools be adapted and tailored for AA communities to 1) appeal to the AA culture; 2) take into consideration the literacy levels of the AA community; and 3) increase understanding of the utility of FHH.1
Failure to effectively engage AA in the conception and creation of culturally relevant FHH tools and activities, along with structural and cultural barriers, likely contributes to their underutilization in this population.4 This negatively impacts screening and preventative measures that could prevent the onset of disease, illness, and ultimately death. Underutilization of FHH tools in the AA community may also be due to a general lack of health literacy and effective health communication.1,31 AA have lower health literacy than European Americans,35 and health literacy remains a critical issue in the AA community. Wang et al. (2010), systematically identified and evaluated the readability of current FHH tools and found that the majority of FHH tools were written at an 8th grade reading level.36 They concluded that the tools were difficult to read and comprehend by most people, and that this compromises the potential impact the FHH can have on a population level.36 Given this contect, this study uses a modified version of the Baker’s Measuring Health Literacy Model (Fig. 1). This model posits that improved health outcomes will result from the intersection of health literacy and the ability to orally communicate health messages to others (health communication).
The goal of this study is to create a culturally tailored FHH tool, co-developed by members of the AA community to inform, educate, and empower AAs about health issues related to their family genealogy. Applying the knowledge gained via FHHs to increase preventative behaviors, including screenings, can link people to needed health services to prevent the onset of disease and illness. The Family Health History Study will develop and pilot test a culturally appropriate FHH toolkit to increase the understanding, utilization, and uptake of FHHs in the AA community, increase health literacy, and increase effective health communication. The ultimate goal is to help address HD and advance health equity.
This study uses a Community Based Participatory Research (CBPR) process. CBPR is a partnership approach to research that equitably involves community members, organizational representatives, researchers, and others in all aspects of the research process, with all partners in the process contributing expertise and sharing in decision-making. CBPR emphasizes a shared frame of equity as it relates to power and benefits of research for both the researcher and the participant/subject.37,38 Unlike traditional positivist science, research results are contextualized within specific community settings and the participants should play an equitable role in the generation of that research context.38 The CBPR approach is rooted in equity and social justice, which is particularly important in the AA community and other communities of color.39,40 The National Institute on Minority Health and Health Disparities embraces CBPR approaches to engaging communities in research to maximize research translation and enhance the effectiveness of interventions to improve health outcomes.41 This further emphasizes the necessity of developing a CBPR created, culturally appropriate FHH prevention toolkit.