Vaughn Edelson

Community-Centered Family Health History: A Customized Approach to Increased Health Communication and Awareness

Background: There has been little study of whether family health history (FHH) tools used by individuals, families, and communities inspire measurable changes in communication and behavior. Objectives: The Community-Centered Family Health History (CCFHH) project was a collaborative endeavor among national and community-based organizations with an interest in genetics education and health. Using community- based participatory research principles as a foundation, CCFHH examined whether the Does It Run In the Family? toolkit, a set of two customizable booklets on health and genetics, encourages discussion and collection of FHH information across diverse communities. Methods: Five communities across the country measured the utility of customized versions of the Does It Run In the Family? toolkit. Each community partner recruited families, consisting of two or more blood relatives, to use the toolkit for 3 months, discuss it among their family members, and consider the implications of the health information. Pre- and postintervention surveys measured family communication about family history and disease risk and the use of FHH information in health care provider interactions. Results: After aggregate, cross-community analysis of individual responses, from pre- to post-toolkit use family members showed increases in communication about family history of disease risk (p < .05) and in awareness about FHH (p < .05). Conclusion: These findings indicate that diverse communities are receptive to FHH intervention, and tailored health educational materials can lead to increased conversations and awareness about health issues across communities.

Implementation of an electronic genomic and family health history tool in primary prenatal care

“The Pregnancy and Health Profile,” (PHP) is a free genetic risk assessment software tool for primary prenatal providers that collects patient‐entered family (FHH), personal, and obstetrical health history, performs risk assessment, and presents the provider with clinical decision support during the prenatal encounter. The tool is freely available for download at www.hughesriskapps.net. We evaluated the implementation of PHP in four geographically diverse clinical sites. Retrospective chart reviews were conducted for patients seen prior to the study period and for patients who used the PHP to collect data on documentation of FHH, discussion of cystic fibrosis (CF) and hemoglobinopathy (HB) carrier screening, and CF and HB interventions (tests, referrals). Five hundred pre‐implementation phase and 618 implementation phase charts were reviewed. Documentation of a 3‐generation FHH or pedigree improved at three sites; patient race/ethnicity at three sites, father of the baby (FOB) race/ethnicity at all sites, and ancestry for the patient and FOB at three sites (P < 0.001–0001). CF counseling improved for implementation phase patients at one site (8% vs. 48%, P < 0.0001) and CF screening/referrals at two (2% vs. 14%, P < 0.0001; 6% vs. 14%; P = 0.05). Counseling and intervention rates did not increase for HB. This preliminary study suggests that the PHP can improve documentation of FHH, race, and ancestry, as well as the compliance with current CF counseling and intervention guidelines in some prenatal clinics. Future evaluation of the PHP should include testing in a larger number of clinical environments, assessment of additional performance measures, and evaluation of the systems overall clinical utility.

Personalizing prenatal care using family health history: identifying a panel of conditions for a novel electronic genetic screening tool

In the age of genomic medicine, family health history (FHH) remains an important tool for personalized risk assessment as it can inform approaches to disease prevention and management. In primary care, including in prenatal settings, providers recognize that FHH enables them to assess the risk for birth defects and complex conditions that not only affect the fetus health, but also the mothers. However, many providers lack the time to gather FHH or the knowledge to confidently interpret the data. Electronic tools providing clinical decision support using FHH data can aid the busy provider with data collection and interpretation. We describe the scope of conditions included in a patient-entered FHH tool that provides clinical decision support and point-of-care education to assist with patient management. This report details how we selected the conditions for which it is appropriate to use FHH as a means to promote personalized medicine in primary prenatal care.

Iona College Community Centered Family Health History Project: Lessons Learned from Student Focus Groups

The Community Centered Family Health History project was initiated to create accessible family health history tools produced by and for the community. The project goal was to promote increased community engagement in health education by encouraging conversations among family members that would translate knowledge of family health history into healthy lifestyle choices. As one of seven community partners, Iona College participated in customizing and beta-testing the Does It Run in the Family? toolkit. Twenty-nine college students were engaged to recruit three relatives related by blood to provide feedback on the utility of the toolkit. The toolkit consists of two booklets—“A Guide to Family Health History” and “A Guide to Understanding Genetics and Health”—explaining the importance of knowing and talking about health within the family as well as basics about how conditions are passed down through generations. Twenty-two of the twenty-nine students participated in focus groups to discuss their reactions to participation in the project. Students in the focus group reported that the study participants—students and their family members—found the toolkit to be user friendly and the experience a valuable one that prompted many to take positive steps toward good health.