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Clinician-Stakeholders’ Perspectives on Using Patient Portals to Return Lynch Syndrome Screening Results

  • Original Research
  • Published:
Journal of Genetic Counseling

Abstract

Test results for genetic conditions, such as Lynch Syndrome (LS), have traditionally been returned by genetic counselors or other providers who can explain results implications and provide psychosocial support. Returning genetic results through an Electronic Health Record’s patient portal may increase the efficiency of returning results and could activate patient follow-up; however, stakeholder input is necessary to determine acceptability and appropriate implementation for LS. Twenty interviews were conducted with clinicians from six specialties involved in LS screening that represent a range of settings. Data were analyzed using directed content analysis and thematic analysis across content categories. Participants felt that patient portals could supplement personal calls, but the potential sensitive nature of LS screening results indicated the need for caution. Others felt that LS results could be returned through portals if there were clear explanations of the result, reputable additional information available within the portal, urging follow up confirmatory testing, and a referral to a genetics specialist. Patient portals were seen as helpful for prompting patient follow-up and providing resources to notify at-risk family members. There is potential for patient portals to return LS screening and other genetic results, however we raise several issues to resolve before implementation is warranted.

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Acknowledgements

Special thanks to the study participants. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health or the authors’ affiliated institution.

Funding

Support for this research comes from National Human Genome Research Institute grant K01 HG008180 (Korngiebel).

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Authors and Affiliations

  1. Department of Biomedical Informatics and Medical Education, University of Washington, Seattle, WA, USA

    Diane M. Korngiebel

  2. Department of Bioethics and Humanities, University of Washington, Seattle, WA, USA

    Kathleen M. West & Wylie Burke

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  1. Diane M. Korngiebel
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  2. Kathleen M. West
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Correspondence to Diane M. Korngiebel.

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Authors Korngiebel, West, and Burke declare that they have no conflicts of interest.

Human Studies and Informed Consent

All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5). Informed consent was obtained from all participants for being included in the study.

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

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Korngiebel, D.M., West, K.M. & Burke, W. Clinician-Stakeholders’ Perspectives on Using Patient Portals to Return Lynch Syndrome Screening Results. J Genet Counsel 27, 349–357 (2018). https://doi.org/10.1007/s10897-017-0179-3

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