Review and Comparison of Electronic Patient‐Facing Family Health History Tools

Welch, Brandon M.; Wiley, Kevin; Pflieger, Lance; Achiangia, Rosaline; Baker, Karen; Hughes‐Halbert, Chanita; Morrison, Heath; Schiffman, Joshua D.; Doerr, Megan

doi:10.1007/s10897-018-0235-7

Cited by 65 publications

(57 citation statements)

References 41 publications

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“…Due to the importance of family history assessment and its lack of systematic documentation, several efforts have been undertaken to develop digital family history tools to improve the documentation and use of family history [9]. Although these tools have mostly been developed as public or patient-facing tools, there is strong evidence to suggest that they may not be accessible to a large portion of the general population with limited health literacy or computer skills, due to high reading grade demands and navigational challenges [10][11][12][13][14].…”

Section: Introductionmentioning

confidence: 99%

Designing and Evaluating a Digital Family Health History Tool for Spanish Speakers

Diez

Cortés

Trevino-Talbot

et al. 2019

IJERPH

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Digital family health history tools have been developed but few have been tested with non-English speakers and evaluated for acceptability and usability. This study describes the cultural and linguistic adaptation and evaluation of a family health history tool (VICKY: VIrtual Counselor for Knowing Your Family History) for Spanish speakers. In-depth interviews were conducted with 56 Spanish-speaking participants; a subset of 30 also participated in a qualitative component to evaluate the acceptability and usability of Spanish VICKY. Overall, agreement in family history assessment was moderate between VICKY and a genetic counselor (weighted kappa range: 0.4695 for stroke—0.6615 for heart disease), although this varied across disease subtypes. Participants felt comfortable using VICKY and noted that VICKY was very likeable and possessed human-like characteristics. They reported that VICKY was very easy to navigate, felt that the instructions were very clear, and thought that the time it took to use the tool was just right. Spanish VICKY may be useful as a tool to collect family health history and was viewed as acceptable and usable. The study results shed light on some cultural differences that may influence interactions with family history tools and inform future research aimed at designing and testing culturally and linguistically diverse digital systems.

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Section: Introductionmentioning

confidence: 99%

Designing and Evaluating a Digital Family Health History Tool for Spanish Speakers

Diez

Cortés

Trevino-Talbot

et al. 2019

IJERPH

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“…While FHH is still commonly collected on paper-based patient intake forms during appointment check-in and then reviewed by a health provider, several online tools have been developed to facilitate the collection and interpretation of FHH [10]. For example, a group of investigators at Duke has developed a FHH clinical decision support system (CDSS) in primary care practices called MeTree [11, 12], and evaluated its clinical utility as part of one of the first programs supported by the NIH’s I mplementing G e N omics I n Prac T ic E (IGNITE).…”

Section: Introductionmentioning

confidence: 99%

Awareness of family health history in a predominantly young adult population

et al. 2019

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Family health history (FHH) is a key predictor of health risk and is universally important in preventive care. However, patients may not be aware of the importance of FHH, and thus, may fail to accurately or completely share FHH with health providers, thereby limiting its utility. In this study, we conducted an online survey of 294 young adults and employees based at a US university setting regarding their knowledge, sharing behaviors, and perceived importance of FHH, and use of electronic clinical tools to document and update FHH. We also evaluated two educational interventions (written and video) to promote knowledge about FHH and its importance to health. We found that 93% of respondents were highly aware of their FHH, though only 39% reported collecting it and 4% using an online FHH tool. Seventy-three percent of respondents, particularly women, had shared FHH with their doctor when prompted, and fewer had shared it with family members. Participants in the video group were significantly more likely to understand the benefits of FHH than those in the written group (p = 0.02). In summary, educational resources, either video or written, will be helpful to promote FHH collection, sharing, and use of online FHH tools.

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“…Family health history (FHH)-based risk assessment is an important way to identify those at greatest risk for inherited conditions and most in need of increased screening and genetic testing services. 10 FHH as currently collected in routine care is frequently inadequate to perform risk assessment. 11 There are numerous barriers to adequate collection and use of this information including lack of patient education and awareness, lack of provider time and resources, and inadequate electronic health record systems for FHH collection and assessment.…”

Section: Background and Significancementioning

confidence: 99%

Effect of Sociodemographic Factors on Uptake of a Patient-Facing Information Technology Family Health History Risk Assessment Platform

Myers

Buchanan

et al. 2019

Appl Clin Inform

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Objective Investigate sociodemographic differences in the use of a patient-facing family health history (FHH)-based risk assessment platform. Methods In this large multisite trial with a diverse patient population, we evaluated the relationship between sociodemographic factors and FHH health risk assessment uptake using an information technology (IT) platform. The entire study was administered online, including consent, baseline survey, and risk assessment completion. We used multivariate logistic regression to model effect of sociodemographic factors on study progression. Quality of FHH data entered as defined as relatives: (1) with age of onset reported on relevant conditions; (2) if deceased, with cause of death and (3) age of death reported; and (4) percentage of relatives with medical history marked as unknown was analyzed using grouped logistic fixed effect regression. Results A total of 2,514 participants consented with a mean age of 57 and 10.4% minority. Multivariate modeling showed that progression through study stages was more likely for younger (p-value = 0.005), more educated (p-value = 0.004), non-Asian (p-value = 0.009), and female (p-value = 0.005) participants. Those with lower health literacy or information-seeking confidence were also less likely to complete the study. Most significant drop-out occurred during the risk assessment completion phase. Overall, quality of FHH data entered was high with condition's age of onset reported 87.85%, relative's cause of death 85.55% and age of death 93.76%, and relative's medical history marked as unknown 19.75% of the time. Conclusion A demographically diverse population was able to complete an IT-based risk assessment but there were differences in attrition by sociodemographic factors. More attention should be given to ensure end-user functionality of health IT and leverage electronic medical records to lessen patient burden.

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Review and Comparison of Electronic Patient‐Facing Family Health History Tools

Cited by 65 publications

References 41 publications

Designing and Evaluating a Digital Family Health History Tool for Spanish Speakers

Designing and Evaluating a Digital Family Health History Tool for Spanish Speakers

Awareness of family health history in a predominantly young adult population

Effect of Sociodemographic Factors on Uptake of a Patient-Facing Information Technology Family Health History Risk Assessment Platform

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