Clinically relevant lessons from Family HealthLink: a cancer and coronary heart disease familial risk assessment tool

How Online Family History Tool Design and Message Content Impact User Perceptions: An Examination of Family Health<b><i>Link</i></b>

“…Previous FHL studies have noted a need for better clinical integration [2], and our results suggest people would find features such as saving and updating information in FHL useful; many participants stated a desire to save, edit, and share their information with family members. Integration with electronic medical records is available in some generalized risk assessment tools [68, 69], but is not standard across tools and has been identified as a key reason for why family health history tools are not yet ready to be implemented in clinical settings [8].…”

“…Although 40 interviews were conducted, only 34 interviews with patients ( n = 16) and support persons ( n = 18, including 11 females and 7 male participants) were analyzed here, due to the poor recording quality of 6 of the interviews. Because FHL is both clinic based and publicly available, we sought the opinions of breast cancer patients, who were encouraged to use FHL in the clinical setting [2], as well as of members of the general public (e.g., support persons) who might access FHL on their own. Breast cancer patients were included in this study since FHL was implemented clinically only within a comprehensive breast care setting.…”

“…Breast cancer patients were included in this study since FHL was implemented clinically only within a comprehensive breast care setting. Given that breast cancer is a common disease, and at least 15% of patients in the comprehensive breast care setting demonstrate hereditary risk patterns [2], family history triage tools like FHL can help identify individuals for which referral for genetic counseling and testing is appropriate.…”

“…FHL was launched as a public interactive website in 2008 and implemented clinically within a comprehensive breast cancer center in 2012. In high-risk patient cohorts seen in a genetics clinic, FHL assessments were corroborated with genetic counselors 91.5% of the time [2]. FHL and James Link are among the most well-researched family history tools; however, with the exception of a study briefly referencing user impressions of James Link [19], research to assess FHL user experiences and perceptions has not been conducted.…”

“…These tools allow for efficient completion of a family health history in the absence of a healthcare professional [1] and may act as a clinical triage tool [2] and first line of disease screening [3], particularly when accompanied by a risk assessment feature. Although online family history tools are shown to have personal and clinical benefits [1, 4, 5], some research suggests their effects could be limited [6, 7] and that they may not be reaching their theorized potential [8].…”