Genetic Counselors’ Current Use of Personal Health Records‐Based Family Histories in Genetic Clinics and Considerations for Their Future Adoption

Abstract

Given the widespread adoption of electronic medical records and recent emergence of electronic family history tools, we examined genetic counselors’ perspectives on the emerging technology of the personal health record (PHR)-based family history tool that links to an electronic medical record (EMR). Two-hundred thirty-three genetic counselors responded to an on-line survey eliciting current use of electronic family history (EFH) tools and familiarity with PHR-based family history tools. Additionally, after being shown a series of screen shots of a newly developed PHR-based family history tool based on the U.S. Surgeon General’s My Family Health Portrait (United States Department of Health and Human Services 2009), participants were surveyed about the perceived usefulness, ease of use, and impact on current workflow that this kind of tool would have in their practices. Eighty-three percent reported that their institution has an EMR, yet only 35 % have a dedicated space for family history. Eighty-two percent reported that less than 5 % of their patients have a PHR, and only 16 % have worked with patients who have a PHR. Seventy-two percent or more agreed that a PHR-based family history tool would facilitate communication, increase accuracy of information, ensure consistency in recording information, increase focus on actual counseling, reduce repetitive questions, improve efficiency, and increase the legibility and clarity. Our findings suggest that participants were familiar with existing EFH tools, but that the majority did not use them in practice. Genetic counselors’ adoption of such tools is limited due to non-existence of this kind of technology or inability to integrate it into their clinics. They are also strongly in favor of adopting a PHR-based family history tool in genetics clinics, but have practical concerns that must be addressed before the tool can be implemented.

Counsellee’s experience of cancer genetic counselling with pedigrees that automatically incorporate genealogical and cancer database information

“…electronic medical records to a family history tool would be time saving (Widmer et al 2013). This has been supported by other studies concluding that time and effort could be saved by enabling counsellees to record their family history by electronic methods (Guttmacher et al 2004, Hulse et al 2011.…”

An Internal Performance Assessment of CancerGene Connect: An Electronic Tool to Streamline, Measure and Improve the Genetic Counseling Process

“…Widmer et al (2013) found that only 16% of the genetic counselors they surveyed had ever had access to an electronic version of their patients’ family histories, and a smaller percentage had patient populations who consistently had access. Barriers to use include concern over ease of use and the inability to modify family history with additional information collected during the session (Widmer et al, 2013).…”

“…Widmer et al (2013) found that only 16% of the genetic counselors they surveyed had ever had access to an electronic version of their patients’ family histories, and a smaller percentage had patient populations who consistently had access. Barriers to use include concern over ease of use and the inability to modify family history with additional information collected during the session (Widmer et al, 2013). Also, many family history collection tools do not allow both patient and provider to input and modify family history information within the electronic system, or collect medical history, which is an important component of the cancer risk assessment.…”

Environmental scan of family chart linking for genetic cascade screening in a U.S. integrated health system

“…The most widely used tools by genetic counselors, My Family Health Portrait (MFHP; freely available at www.familyhistory.hhs.gov ) and Family Healthware ( http://www.cdc.gov/genomics/about/family.htm ), are not integrated into EHR systems ( Feero, Bigley and Brinner, 2008 ). Qualitative work by Widmer et al among genetic counselors found limited adoption of these tools because of their lack of integration into EHR systems ( Widmer et al, 2013 ), seeking tools that were consistent (i.e., standardized), reduce repetitive questions, and improve clarity of clinical implications.…”