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Journal of Genetic Counseling

, Volume 27, Issue 2, pp 381–391 | Cite as

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

  • Brandon M. Welch
  • Kevin Wiley
  • Lance Pflieger
  • Rosaline Achiangia
  • Karen Baker
  • Chanita Hughes-Halbert
  • Heath Morrison
  • Joshua Schiffman
  • Megan Doerr
Original Research

Abstract

Family health history (FHx) is one of the most important pieces of information available to help genetic counselors and other clinicians identify risk and prevent disease. Unfortunately, the collection of FHx from patients is often too time consuming to be done during a clinical visit. Fortunately, there are many electronic FHx tools designed to help patients gather and organize their own FHx information prior to a clinic visit. We conducted a review and analysis of electronic FHx tools to better understand what tools are available, to compare and contrast to each other, to highlight features of various tools, and to provide a foundation for future evaluation and comparisons across FHx tools. Through our analysis, we included and abstracted 17 patient-facing electronic FHx tools and explored these tools around four axes: organization information, family history collection and display, clinical data collected, and clinical workflow integration. We found a large number of differences among FHx tools, with no two the same. This paper provides a useful review for health care providers, researchers, and patient advocates interested in understanding the differences among the available patient-facing electronic FHx tools.

Keywords

Family health history Health IT Patient engagement Family history tools Pedigree 

Notes

Acknowledgements

The authors would like to acknowledge various support for this research. BMW is supported in part by funding from the National Cancer Institute (5K07CA211786) and the Hollings Cancer Center’s Cancer Center Support Grant (P30 CA138313) at the Medical University of South Carolina. LP the University of Utah Program Personalized Health Graduate Fellowship; the Richard A. Fay and Carol M. Fay Endowed Graduate Fellowship for the Department of Biomedical Informatics in Honor of Homer R. Warner, M.D., Ph.D.; and the National Library of Medicine Training Grant (T15LM007124). JDS holds an Edward B. Clark, MD Chair in Pediatric Research at the University of Utah and is a member of the Primary Children’s Hospital (PCH) Pediatric Cancer Program, funded by the Intermountain Healthcare Foundation and the Primary Children’s Hospital Foundation. MD would like to thank her collaborators Grant Wood, Jeff Greenberg, Ingrid Winship, Ed Conley, and Marie Wood from the Family History Task Team of the Global Alliance for Genomics in Health (GA4GH) for their work on the first iteration of the GA4GH Family History Tool Inventory and for the GA4GH for its ongoing support of a living family history tool inventory. Finally, a special thanks to Mary Johnston for the manuscript editing.

Compliance with Ethical Standards

Conflicts of Interest

BM, HM, and JS are founders and shareholders of ItRunsInMyFamily, Inc.

MD, during her time at Cleveland Clinic, was a co-inventor of the MyFamily (now called MyLegacy) intellectual property portfolio. The IP is licensed to Family Care Path, Inc. As part of this license, MD is entitled to a share in both royalties and returns on equity.

KW, RA, KB, and CH declare that they have no conflict of interest.

Human Studies and Informed Consent

No human studies were carried out by the authors for this article.

Animal Studies

No animal studies were carried out by the authors for this article.

Supplementary material

10897_2018_235_MOESM1_ESM.docx (7.1 mb)
ESM 1 (DOCX 7.07 mb)

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Copyright information

© National Society of Genetic Counselors, Inc. 2018

Authors and Affiliations

  1. 1.Biomedical Informatics Center, Department of Public Health SciencesMedical University of South CarolinaCharlestonUSA
  2. 2.Hollings Cancer CenterMedical University of South CarolinaCharlestonUSA
  3. 3.ItRunsInMyFamily.com, Inc.CharlestonUSA
  4. 4.Richard M. Fairbanks School of Public HealthIndiana UniversityIndianapolisUSA
  5. 5.Department of Biomedical InformaticsUniversity of UtahSalt Lake CityUSA
  6. 6.Department of Psychiatry and Behavioral SciencesMedical University of South CarolinaCharlestonUSA
  7. 7.Department of PediatricsUniversity of UtahSalt Lake CityUSA
  8. 8.Sage BionetworksSeattleUSA

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