Family Health History: CHWs Definitions, Patient Conversations and Potential Role in Digital Documentation

Theoretical Background and research questions/hypothesis:

The Diffusion of Innovations (DOI) and Consolidated Framework for Implementation Research (CFIR) can be applied to consider potential opportunities and challenges for engaging CHWs in the dissemination of genomic information for patient education and provider use. These theories provide frameworks for assessing the likelihood that, and pace at which, novel ideas are adopted and include the consideration of barriers and facilitators to uptake. Together these frameworks suggest that some CHWs are likely to be receptive earlier to integrating genomics into their health promotion activities than others, and that some contexts are likely to be more elucidative of these discussions than others. Our research explored (1) CHWs conceptualization of family health history (FHH), (2) current communication and collection practices of FHH from patients, (3) and user experiences (UX) with two publicly available digital tools for collecting FHH.

Methods:

We conducted 30 semi-structured interviews with CHWs in Georgia to understand how they defined FHH, how they collected, documented and shared FHH information, as well as how they perceived the quality of existing digital tools for collecting FHH. Interview questions were guided by the Consolidated Framework for Implementation Research and also included perceived training needs to complete a FHH record using a FHH collection tool. All interviews were double coded in MAXQDA using a codebook developed, adapted, and agreed upon by the research team.

Results:

All participants agreed with the provided definition of FHH, but some shared extended understandings of FHH. Many did not plan conversations around FHH in the scope of their role, but referenced patients sometimes volunteered the information. CHWs discussed a desire to increase their knowledge of medical terminology to translate insights from patients to actionable steps by a healthcare provider. Overall, participants provided positive feedback regarding perceived ease of use and advantage of the digital FHH collection tools relative to their current practices. However, they considered the complexities of collecting FHH and digital documentation incompatible with factors such as time constraints, varying interests and comfort levels from patients to share personal information about their relatives.

Conclusions:

CHW’s levels of experience collecting FHH and current understanding of what FHH is will need to be considered for the development of appropriate skills-based trainings and implementation of FHH gathering interventions. Additionally, CHWs seek patient education guidance and resources to increase community awareness of the potential benefits that come with knowing and sharing FHH for prevention and healthcare efforts.

Implications for research and/or practice:

Given FHH gathering requires culturally sensitive interpersonal communication skills, a clear and shared understanding of how FHH is defined is needed in addition to tools adaptable for practice. It may be especially important to foster self-efficacy and provide CHWs with resources such as conversation guides and practice recommendations related to disseminating the FHH information to a healthcare management team. While initial interactions with the digital FHH collection tools among CHWs were positive, the tools should be tested in real-world settings with patients to assess the process and outcomes of FHH collection, as well as the impact related to disease prevention and health management.