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

Patient-facing digital tools in genetics can increase efficiency and personalized care, but may threaten patient-provider relationships due to a diminished sense of connection associated with traditional face-to-face encounters. To learn about their 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 genetic testing. Data was 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. Digital tools can be tailored to each patient’s circumstances and needs, allowing patients to feel like partners in their care while retaining a sense of connection with their providers.