The role of digital tools in the delivery of genomic medicine: Enhancing patient-centered care Journal Article


Authors: Shickh, S.; Rafferty, S. A.; Clausen, M.; Kodida, R.; Mighton, C.; Panchal, S.; Lorentz, J.; Ward, T.; Watkins, N.; Elser, C.; Eisen, A.; Carroll, J. C.; Glogowski, E.; Schrader, K. A.; Lerner-Ellis, J.; Kim, R. H.; Chitayat, D.; Shuman, C.; Bombard, Y.; Incidental Genomics Study Team
Contributors: Hamilton, J. G.; Offit, K.; Robson, M. E.
Article Title: The role of digital tools in the delivery of genomic medicine: Enhancing patient-centered care
Abstract: Purpose: Alternative models of genetic counseling are needed to meet the rising demand for genomic sequencing. Digital tools have been proposed as a method to augment traditional counseling and reduce burden on professionals; however, their role in delivery of genetic counseling is not established. This study explored the role of the Genomics ADvISER, a digital decision aid, in delivery of genomic counseling. Methods: We performed secondary analysis of 52 pretest genetic counseling sessions that were conducted over the course of a randomized controlled trial evaluating the effectiveness of the Genomics ADvISER. As part of the trial, participants were randomized to receive standard counseling or use the tool and then speak with a counselor. A qualitative interpretive description approach using thematic analysis and constant comparison was used for analysis. Results: In the delivery of genomic counseling, the Genomics ADvISER contributed to enhancing counseling by (1) promoting informed dialogue, (2) facilitating preference-sensitive deliberation, and (3) deepening personalization of decisions, all of which represent fundamental principles of patient-centered care: providing clear high-quality information, respecting patients’ values, preferences, and expressed needs, and providing emotional support. Conclusion: This study demonstrates that our digital tool contributed to enhancing patient-centered care in the delivery of genomic counseling. © 2021, The Author(s), under exclusive licence to the American College of Medical Genetics and Genomics.
Keywords: adult; controlled study; counseling; randomized controlled trial; patient care; patient-centered care; genomics; genetic counseling; secondary analysis; thematic analysis; comparative effectiveness; humans; human; male; female; article; counselors; counselor
Journal Title: Genetics in Medicine
Volume: 23
Issue: 6
ISSN: 1098-3600
Publisher: Nature Publishing Group  
Date Published: 2021-06-01
Start Page: 1086
End Page: 1094
Language: English
DOI: 10.1038/s41436-021-01112-1
PROVIDER: scopus
PUBMED: 33654192
PMCID: PMC9306004
DOI/URL:
Notes: Article -- Source: Scopus
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  1. Kenneth Offit
    788 Offit
  2. Mark E Robson
    676 Robson
  3. Jada Gabrielle Hamilton
    111 Hamilton