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Cohn WF , Ropka ME , Pelletier SL , Barrett JR , Kinzie MB , Harrison MB , Liu Z , Miesfeldt S , Tucker AL , Worrall BB , Gibson J , Mullins IM , Elward KS , Franko J , Guterbock TM , Knaus WA
Health Heritage (c), a Web-Based Tool for the Collection and Assessment of Family Health History: Initial User Experience and Analytic Validity
Public Health Genomics. 2010 ;13(7-8) :477-491
PMID: ISI:000285011900011   
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Abstract
A detailed family health history is currently the most potentially useful tool for diagnosis and risk assessment in clinical genetics. We developed and evaluated the usability and analytic validity of a patient-driven web-based family health history collection and analysis tool. Health Heritage c guides users through the collection of their family health history by relative, generates a pedigree, completes risk assessment, stratification, and recommendations for 89 conditions. We compared the performance of Health Heritage to that of Usual Care using a nonrandomized cohort trial of 109 volunteers. We contrasted the completeness and sensitivity of family health history collection and risk assessments derived from Health Heritage and Usual Care to those obtained by genetic counselors and genetic assessment teams. Nearly half (42%) of the Health Heritage participants reported discovery of health risks; 63% found the information easy to understand and 56% indicated it would change their health behavior. Health Heritage consistently outperformed Usual Care in the completeness and accuracy of family health history collection, identifying 60% of the elevated risk conditions specified by the genetic team versus 24% identified by Usual Care. Health Heritage also had greater sensitivity than Usual Care when comparing the identification of risks. These results suggest a strong role for automated family health history collection and risk assessment and underscore the potential of these data to serve as the foundation for comprehensive, cost-effective personalized genomic medicine. Copyright (C) 2010 S. Karger AG, Basel
Notes
Cohn, W. F. Ropka, M. E. Pelletier, S. L. Barrett, J. R. Kinzie, M. B. Harrison, M. B. Liu, Z. Miesfeldt, S. Tucker, A. L. Worrall, B. B. Gibson, J. Mullins, I. M. Elward, K. S. Franko, J. Guterbock, T. M. Knaus, W. A. Robert Wood Johnson Foundation We thank the many team members who provided scientific and technical support and constructive criticism to this project, including Anthony Wenzel at Dominion Digital, Inc., Ashraful Huq, Thad Kelly (deceased), Wendy Novicoff, Patricia Schnatterly, and William Woolfolk. This work was supported, in part, by a grant to W.A. Knaus through the Robert Wood Johnson Foundation. 34 Karger; allschwilerstrasse 10, ch-4009 basel, switzerland 690nq