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

被引:53
作者
Welch, Brandon M. [1 ,2 ,3 ]
Wiley, Kevin [4 ]
Pflieger, Lance [5 ]
Achiangia, Rosaline [1 ]
Baker, Karen [2 ]
Hughes-Halbert, Chanita [6 ]
Morrison, Heath [3 ]
Schiffman, Joshua [3 ,7 ]
Doerr, Megan [8 ]
机构
[1] Med Univ South Carolina, Dept Publ Hlth Sci, Biomed Informat Ctr, Charleston, SC 29425 USA
[2] Med Univ South Carolina, Hollings Canc Ctr, Charleston, SC 29425 USA
[3] ItRunsInMyFamily com Inc, Charleston, SC 29403 USA
[4] Indiana Univ, Richard M Fairbanks Sch Publ Hlth, Indianapolis, IN 46204 USA
[5] Univ Utah, Dept Biomed Informat, Salt Lake City, UT USA
[6] Med Univ South Carolina, Dept Psychiat & Behav Sci, Charleston, SC USA
[7] Univ Utah, Dept Pediat, Salt Lake City, UT USA
[8] Sage Bionetworks, Seattle, WA USA
关键词
Family health history; Health IT; Patient engagement; Family history tools; Pedigree; PRIMARY-CARE PHYSICIANS; CANCER-RISK-ASSESSMENT; SURGEON GENERALS; PRENATAL-CARE; UTILITY; IMPLEMENTATION; IDENTIFICATION; VALIDATION; COLLECTION; EXPERIENCE;
D O I
10.1007/s10897-018-0235-7
中图分类号
Q3 [遗传学];
学科分类号
071007 ; 090102 ;
摘要
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.
引用
收藏
页码:381 / 391
页数:11
相关论文
共 55 条
[1]   Family history-taking in community family practice: Implications for genetic screening [J].
Acheson, LS ;
Wiesner, GL ;
Zyzanski, SJ ;
Goodwin, MA ;
Stange, KC .
GENETICS IN MEDICINE, 2000, 2 (03) :180-185
[2]  
[Anonymous], 2016, NIH FAM HLTH HIST TO
[3]  
[Anonymous], 2018, CATALOGUE GLOBAL ACT
[4]   Veterans' experience in using the online Surgeon General's family health history tool [J].
Arar, Nedal ;
Seo, Joann ;
Abboud, Hanna E. ;
Parchman, Michael ;
Noel, Polly .
PERSONALIZED MEDICINE, 2011, 8 (05) :523-532
[5]  
Baumgart L. A., 2015, FAMILIAL CANC
[6]  
Baumgart L. A., 2013, AMIA 2013 ANN S WASH
[7]   Awareness and Utilization of BRCA1/2 Testing Among US Primary Care Physicians [J].
Bellcross, Cecelia A. ;
Kolor, Katherine ;
Goddard, Katrina A. B. ;
Coates, Ralph J. ;
Reyes, Michele ;
Khoury, Muin J. .
AMERICAN JOURNAL OF PREVENTIVE MEDICINE, 2011, 40 (01) :61-66
[8]   Mothers' Perceptions of Family Health History and an Online, Parent-Generated Family Health History Tool [J].
Berger, Kelly Amanda ;
Lynch, John ;
Prows, Cynthia A. ;
Siegel, Robert M. ;
Myers, Melanie F. .
CLINICAL PEDIATRICS, 2013, 52 (01) :74-81
[9]   Providing access to risk prediction tools via the HL7 XML-formatted risk web service [J].
Chipman, Jonathan ;
Drohan, Brian ;
Blackford, Amanda ;
Parmigiani, Giovanni ;
Hughes, Kevin ;
Bosinoff, Phil .
BREAST CANCER RESEARCH AND TREATMENT, 2013, 140 (01) :187-193
[10]   Health Heritage©, a Web-Based Tool for the Collection and Assessment of Family Health History: Initial User Experience and Analytic Validity [J].
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. .
PUBLIC HEALTH GENOMICS, 2010, 13 (7-8) :477-491