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<p>Patient-facing digital tools in genetics can increase efficiency and personalize care, but may threaten patient-provider relationships due to a diminished sense of connection associated with traditional face-to-face encounters. To learn about experiences with and preferences for using digital tools in the delivery of genetic services, semi-structured interviews were conducted with patients or parents of children who had clinical or research genetic testing. Direct experience with a digital healthcare tool was not required for inclusion. Data were analyzed thematically. A total of thirty participants from across Canada were interviewed. Of these, 17 (57%) received genetic testing for themselves and 20 (67%) identified as female. Participants described previous positive experiences with digital tools in medical settings and welcomed the shift towards their increased use in genetics. Participants desired increased agency, access, and control while maintaining the human touch with their healthcare providers. They anticipated that supplementing care with a digital tool could provide the balance and personalization desired for digitally-enabled agency and better access to health information, including genetic test results. Digital tools can facilitate innovation in patient-centered care, enabling a personalized model of care that retains a sense of connection with healthcare providers.</p>

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Patients’ and parents’ views on how digital tools enable personalized and partnered care in genetics: a qualitative study

  • 期刊论文

  • 出版模式：

    开放获取

  • 发表日期：

    2026年8月5日

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  • Daniel Assamad,
  • Saumeh Saeedi,
  • Sonya Grewal,
  • Vedika Jha,
  • Stephanie Luca,
  • Marc Clausen,
  • Angela Shaw,
  • Whiwon Lee,
  • Yvonne Bombard,
  • Robin Z. Hayeems,
  • Melyssa Aronson,
  • Francois Bernier,
  • Michael Brudno,
  • June C. Carroll,
  • Lauren Chad,
  • Ronald Cohn,
  • Gregory Costain,
  • Irfan Dhalla,
  • Hanna Faghfoury,
  • Jan Friedman,
  • Stacy Hewson,
  • Trevor Jamieson,
  • Rebekah Jobling,
  • Anne-Marie Laberge,
  • Jordan Lerner-Ellis,
  • Eriskay Liston,
  • Muhammad Mamdani,
  • Christian Marshall,
  • Matthew Osmond,
  • Quynh Pham,
  • Emma Reble,
  • Frank Rudzicz,
  • Emily Seto,
  • Serena Shastri-Estrada,
  • Cheryl Shuman,
  • Josh Silver,
  • Maureen Smith,
  • Kevin Thorpe,
  • Wendy J. Ungar

摘要

Patient-facing digital tools in genetics can increase efficiency and personalize care, but may threaten patient-provider relationships due to a diminished sense of connection associated with traditional face-to-face encounters. To learn about experiences with and preferences for using digital tools in the delivery of genetic services, semi-structured interviews were conducted with patients or parents of children who had clinical or research genetic testing. Direct experience with a digital healthcare tool was not required for inclusion. Data were analyzed thematically. A total of thirty participants from across Canada were interviewed. Of these, 17 (57%) received genetic testing for themselves and 20 (67%) identified as female. Participants described previous positive experiences with digital tools in medical settings and welcomed the shift towards their increased use in genetics. Participants desired increased agency, access, and control while maintaining the human touch with their healthcare providers. They anticipated that supplementing care with a digital tool could provide the balance and personalization desired for digitally-enabled agency and better access to health information, including genetic test results. Digital tools can facilitate innovation in patient-centered care, enabling a personalized model of care that retains a sense of connection with healthcare providers.