Applying theory to characterize impediments to dissemination of community-facing family health history tools: a review of the literature

Allen, Caitlin G.; Duquette, Debra; Guan, Yue; McBride, Colleen M.

doi:10.1007/s12687-019-00424-9

Cited by 8 publications

(9 citation statements)

References 65 publications

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“…Moreover, families are an important social context for intervention and lifestyle-focused disease prevention because members tend to share behavioral, social, economic, and environmental risk factors and members can influence one another's potential for behavior change [3]. Thus, FHH is a powerful and underutilized tool that helps individuals and families understand their risk for diseases with genetic underpinnings and encourage the adoption of risk-reducing behaviors [4].…”

Section: Introductionmentioning

confidence: 99%

Formative Evaluation of the Families SHARE Disease Risk Tool among Low-Income African Americans

Whitted

Koehly

2021

Public Health Genomics

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Introduction: Family Health Histories (FHH) have been endorsed by the surgeon general as a powerful yet underutilized tool for identifying individuals at risk for complex chronic diseases such as diabetes, heart disease, and cancer. FHH tools provide a mechanism for increasing communication about disease history and motivating behavior change to reduce disease risk. A critical gap in translation efforts includes a lack of research that adapts and evaluates tools for low-income, minority populations who experience disparities in chronic disease. Methods: This study is a formative mixed-methods evaluation of an evidence-based FHH intervention called “Families SHARE” among African Americans residing in low-income neighborhoods. Participants (N = 51) completed assessments before and 6 weeks after receiving the intervention, including surveys and focus groups. We evaluated (a) their use, understanding, and perceived value of the tool; (b) if the intervention led to increased intentions to adopt disease risk-reducing behaviors among those with heightened disease risk, given their FHH; and (c) acceptability of and recommendations for the tool. Results: The quantitative and qualitative data indicated that this population valued and used the tool, and it prompted communication about FHH with family, friends, and others. Receipt of the intervention resulted in mixed accuracy of their perceived disease risk, and it did not shift intentions to change health behaviors. Qualitative data provide insights for future iterations of the Families SHARE tool. Conclusion: Families SHARE is an engaging FHH tool that can be further tailored to optimize its value and benefits for low-income African Americans.

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Section: Introductionmentioning

confidence: 99%

Formative Evaluation of the Families SHARE Disease Risk Tool among Low-Income African Americans

Whitted

Koehly

2021

Public Health Genomics

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“…Finally, we aimed to give CHWs experience with one of the nationally recommended FHH assessment tools in order to help gauge issues of efficacy. These tools were selected based on a prior literature review of community-facing FHH tools (Allen, Gue, et al, 2018). We elected to provide participants with the opportunity to use the tools in order to provide them with real-time experience to help answer questions related to integration of FHH tools into their workflow.…”

Section: Methodsmentioning

confidence: 99%

“…Despite the large and consistent evidence base supporting the value of CHWs for health promotion, to date there have been limited efforts to systematically involve CHWs in one of the most basic disease prevention activities—family health history (FHH) collection (Allen, Gue, et al, 2018). It is well acknowledged that FHH information is key for determining disease risk and informing screening and prevention recommendations across multiple diseases (Hampel et al, 2015; Smith et al, 2018; Smith et al, 2019).…”

mentioning

confidence: 99%

Exploring the Role of Community Health Workers in Improving the Collection of Family Health History: A Pilot Study

Allen

Bethea

McKinney

et al. 2021

Health Promotion Practice

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Community health workers (CHWs) have been successful partners in addressing public health and health care challenges but have yet to be engaged in efforts to promote family health history (FHH) collection. FHH information is a key factor in determining disease risk and supporting screening and prevention across multiple diseases. The collection of FHH information could be facilitated by the existing cadre of CHWs already working alongside clients and families. In this qualitative study, we interviewed 30 CHWs from Georgia to better understand the current level of knowledge about FHH, perceptions of how FHH collection aligns with their role, and barriers and facilitators in order to support more active involvement of CHWs in FHH collection. Interviews were completed, transcribed, and double coded by three study team members. More than half of CHWs reported knowing their own FHH information. CHWs showed a strong interest and support for collecting FHH in their job, despite limited current engagement in this role. CHWs acknowledged the collection of FHH as being an opportunity to empower clients to have conversations with their providers. To better support this work, CHWs requested training in using and integrating FHH tools into their workflow and support in communicating about FHH with their clients. Our findings suggest that with support and training, CHWs are uniquely positioned to improve FHH collection among their client base. Ultimately, improving FHH collection skills among the population could allow for better integration of risk-stratified approaches that are informed by FHH information for the prevention, management, and treatment of disease.

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“…Documentation requirements for billing endorse the value of FFH because it changes management and motivates behavior change. Rather than being replaced by genetic testing, FHH enhances the quality of variant interpretation by modifying prior probability, particularly for variants of uncertain significance (Allen et al 2020). FHH serves as a crucial bridge between the observed phenomenon of inheritance and genomic variation.…”

Section: Introductionmentioning

confidence: 99%

“…Trends indicate that FHH is more important than ever. FFH value in familial disorders is increasing, especially in cancer, advanced by better risk guidance (Allen et al 2020). The expanding genetic and genomic testing volume in general health care parallels new management options.…”

Section: Introductionmentioning

confidence: 99%

Modernizing family health history: achievable strategies to reduce implementation gaps

2021

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Family health history (FHH) is a valuable yet underused healthcare tool for assessing health risks for both prevalent disorders like diabetes, cancer, and cardiovascular diseases, and for rare, monogenic disorders. Full implementation of FHH collection and analysis in healthcare could improve both primary and secondary disease prevention for individuals and, through cascade testing, make at risk family members eligible for pre-symptomatic testing and preventative interventions. In addition to risk assessment in the clinic, FHH is increasingly important for interpreting clinical genetic testing results and for research connecting health risks to genomic variation. Despite this value, diverse implementation gaps in clinical settings undermine its potential clinical value and limit the quality of connected health and genomic data. The NHGRI Family Health History Group, an open-membership, US-based group with international members, believes that integrating FHH in healthcare and research is more important than ever, and that achievable implementation advances, including education, are urgently needed to boost the pace of translational utility in genomic medicine. An inventory of implementation gaps and proposed achievable strategies to address them, representing a consensus developed in meetings from 2019-2020, is presented here. The proposed measures are diverse, interdisciplinary, and are guided by experience and ongoing implementation and research efforts.

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Applying theory to characterize impediments to dissemination of community-facing family health history tools: a review of the literature

Cited by 8 publications

References 65 publications

Formative Evaluation of the Families SHARE Disease Risk Tool among Low-Income African Americans

Formative Evaluation of the Families SHARE Disease Risk Tool among Low-Income African Americans

Exploring the Role of Community Health Workers in Improving the Collection of Family Health History: A Pilot Study

Modernizing family health history: achievable strategies to reduce implementation gaps

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