Abstract
Our purpose was to explore genetics health professionals’ (GHPs) expectations of primary care providers' (PCPs) role in genomic medicine now and in the future. Focus groups/interviews were conducted with GHPs in Ontario, Canada. Recordings were transcribed and analysed using qualitative descriptive analysis. Five focus groups (6 clinical geneticists, 24 genetic counselors, 1 nurse, 4 laboratory staff, 3 genetics program administrators) and 3 interviews (nurses) were conducted. GHPs described a key role for PCPs in genomic medicine that could be enhanced if GHPs and PCPs worked together more effectively, making better use of GHPs as a scarce specialist resource, improving PCP knowledge and awareness of genomics, and increasing GHPs’ understanding of primary care practice and how to provide PCPs meaningful education and support. Health system change is needed to facilitate the GHP/PCP relationship and improve care. This might include: PCPs ordering more genetic tests independently or with GHP guidance prior to GHP consultations, genomic expertise in primary care clinics or GHPs being accessible through buddy systems or virtually through telemedicine or electronic consultation, and developing educational materials and electronic decision support for PCPs. Our findings highlight need for change in delivering genomic medicine, which requires building the relationship between GHPs and PCPs, and creating new service delivery models to meet future needs.
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Funding
This study was funded by Genetics Education Canada—Knowledge Organization (GEC-KO) which is supported by funding from the Children’s Hospital of Eastern Ontario.
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JC: conceptualization, formal analysis, funding acquisition, methodology, writing–original draft.
SM: conceptualization, data curation, formal analysis, methodology, project administration, writing–review and editing.
FM: conceptualization, formal analysis, methodology, writing–review and editing.
BW: conceptualization, formal analysis, methodology, writing–review and editing.
JP: conceptualization, methodology, project administration, writing–review and editing.
JA: conceptualization, formal analysis, funding acquisition, methodology, writing–review and editing.
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Ethics approval was obtained from the Children’s Hospital of Eastern Ontario Research Ethics Board (REB). Informed consent was obtained from all participants as required by the REB.
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Carroll, J.C., Morrison, S., Miller, F.A. et al. Anticipating the primary care role in genomic medicine: expectations of genetics health professionals. J Community Genet 12, 559–568 (2021). https://doi.org/10.1007/s12687-021-00544-1
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DOI: https://doi.org/10.1007/s12687-021-00544-1