Genetic counselors' current use of personal health records-based family histories in genetic clinics and considerations for their future adoption

Journal of Genetic Counseling

Volumn 22, Issue 3, 2013, Pages 384-392

  Widmer, Chaney ^a   Deshazo, Jonathan P ^a   Bodurtha, Joann ^b   Quillin, John ^a   Creswick, Heather ^a  

^a VIRGINIA COMMONWEALTH UNIVERSITY   (United States)

^b JOHNS HOPKINS UNIVERSITY   (United States)

Author keywords

Electronic family history tool; Electronic health record; Electronic medical record; Family history; Patient portal; Pedigree

Indexed keywords

ADOPTION; ANAMNESIS; CROSS-SECTIONAL STUDY; GENETIC COUNSELING; HUMAN; MEDICAL RECORD; ARTICLE;

ADOPTION; CROSS-SECTIONAL STUDIES; GENETIC COUNSELING; HEALTH RECORDS, PERSONAL; HUMANS; MEDICAL HISTORY TAKING;

EID: 84877923785     PISSN: 10597700     EISSN: 15733599     Source Type: Journal    
DOI: 10.1007/s10897-012-9557-z     Document Type: Article

References (25)

1. Acheson, L. A., Zyzanski, S. J., Stange, K. C., Deptowicz, A., & Wiesner, G. L. (2006). Validation of a self-administered, computerized tool for collecting and displaying the family history of cancer. Journal of Clinical Oncology. doi: 10.1200/JCO.2006.07.2462.
2. Bennett, R. L. (2012). The family medical history as a tool in preconception consultation. Journal of Community Genetics. doi: 10.1007/s12687-012-0107-z.
3. Bennett, R. L., French, K. S., Resta, R. G., & Doyle, D. L. (2008). Standardized human pedigree nomenclature: update and assessment of the recommendations of the National Society of Genetic Counselors. Journal of Genetic Counseling. doi: 10.1007/s10897-008-9169-9.
4. Cohn, W. F., Ropka, M. E., Pelletier, S. L., Barrett, J. R., Kinzie, M. B., Harrison, M. B., et al. (2010). Health Heritage©, a web-based tool for the collection and assessment of family health history: initial user experience and analytic validity. Public Health Genomics. doi: 10.1159/000294415.
5. Enns, E. E., Boudreault, P., & Palmer, C. G. S. (2009). Examining the relationship between genetic counselors' attitudes towards deaf people and the genetic counseling session. Journal of Genetic Counseling. doi: 10.1007/s10897-009-9272-6.
6. Feero, W. G., Bigley, M. B., & Brinner, K. M. (2008). New standards and enhanced utility for family health history information in the electronic health record: an update from the American Health Information Community's Family Health History Multi-Stakeholder Workgroup. Journal of Medical Informatics Association. doi: 10.1197/jamia.M2793.
7. Glaser, J., Henley, D. E., Downing, G., & Brinner, K. M. (2008). Health Care Workgroup of the American Health Information Community. Advancing personalized health care through health information technology: an update from the American Health Information Community's Personalized Health Care Workgroup. Journal of the American Medical Informatics Association. doi: 10.1197/jamia.M2718.
8. Guttmacher, A. E., Collins, F. S., & Carmona, R. H. (2004). The family history-more important than ever. The New England Journal of Medicine, 351(22), 2333-2336.
9. He, M., & Li, W. (2007). PediDraw: a web-based tool for drawing a pedigree in genetic counseling. BMC Medical Genetics. doi: 10.1186/1471-2350-8- 31.
10. Hoffman, M. A. (2007). The genome-enabled electronic medical record. Journal of Biomedical Informatics. doi: 10.1016/j.jbi.2006.02.010.
11. Hulse, N. C., Ranade-Kharkar, P., Post, H., Wood, G. M., Williams, M. C., & Haug, P. J. (2011). Development and early usage patterns of a consumer-facing family health history tool. AMIA Annual Symposium Proceedings, 578-587.
12. Inquisite Inc. (2009). www.inquisite.com. Accessed on April 3, 2012.
13. Levenson, D. (2012). Electronic family health history records draws attention. American Journal of Medical Genetics. doi: 10.1002/ajmg.a.35459.
14. Mackoff, R. L., Iverson, E. F., Kiekel, P., Dorey, F., Upperman, J. S., & Metzenberg, A. B. (2010). Attitudes of genetic counselors towards genetic susceptibility testing in children. Journal of Genetic Counseling. doi: 10.1007/s10897-010-9298-9.
15. Martin-Sanchez, F., Iakovidis, I., Norager, S., Maojo, V., de Groen, P., Van der Lei, J., et al. (2004). Synergy between medical informatics and bioinformatics: facilitating genomic medicine for future health care. Journal of Biomedical Informatics. doi: 10.1016/j.jbi.2003.09.003.
16. National Society of Genetic Counselors (2010). 2010 Professional status survey: executive summary. Available from http://www.nsgc.org/Portals/0/ Publications/PSS%202010%20Executive%20Summary%20FINAL.pdf. Accessed on February 4, 2012.
17. Orlando, L. A., Hauser, E. R., Christianson, C., Powell, K. P., Buchanan, A. H., Chesnut, B., et al. (2011). Protocol for implementation of family health history collection and decision support into primary care using a computerized family health history system. BMC Health Services Research. doi: 10.1186/1472-6963-11-264.
18. Peace, J., Valdez, R. S., & Lutz, K. L. (2012). Data-based considerations for electronic family health history applications. Computer, Informatics, Nursing. doi: 10.1097/NCN.0b013e31822b865b.
19. Rich, E. C., Burke, W., Heaton, C. J., Haga, S., Pinsky, L., Short, M. P., et al. (2004). Reconsidering the family history in primary care. Journal of General Internal Medicine. doi: 10.1111/j.1525-1497.2004.30401.x.
20. SAS Institute Inc. (2009). JMP [computer program]. Release 8.0. Cary, NC.
21. Scheuner, M. T., de Vries, H., Kim, B., Meili, R. C., Olmstead, S. H., & Teleki, S. (2009). Are electronic health records ready for genomic medicine? Genetics in Medicine. doi: 10.1097/GIM.0b013e3181a53331.
22. Secretary's Advisory Committee on Genetics, Health, and Society (2004). Resolution of the Secretary's Advisory Committee on Genetics, Health, and Society on genetics education and training of health professionals. Available from: http://oba.od.nih.gov/ oba/sacghs/reports/EducationResolutionJune04.pdf. Accessed on April 24, 2012.
23. United States Department of Health and Human Services (2009). My family health portrait. Available from: https://familyhistory.hhs.gov/fhh-web/home. action. Accessed on April 3, 2012.
24. Wald, J. S., Businger, A., Gandhi, T. K., Grant, R. W., Poon, E. G., Schnipper, J. L., Volk, L. A., & Middleton, B. (2010). Implementing practice-linked pre-visit electronic journals in primary care: patient and physician use and satisfaction. Journal of the American Medical Informatics Association. doi: 10.1136/jamia.2009.001362.
25. Yoon, P. W., Scheuner, M. T., Jorgensen, C., & Khoury, M. J. (2009). Developing family healthware, a family history screening tool to prevent common chronic diseases. Preventing Chronic Disease, 6(1), 1-11.