2023 ACMG Annual Clinical Genetics Meeting Digital Edition: Poster Gallery-Patients' and Parents' perspectives on the use of digital tools to deliver genetic services.

Pdf Summary

In this study, researchers aimed to understand patients' opinions and preferences regarding the use of digital tools in delivering genetic services. The study included 30 participants, consisting of adult patients and parents of patients. The majority of participants were female (20) and aged 50 years or older (15). Most of the participants held a graduate degree or higher (14).<br /><br />The study found that digital health tools, such as apps and chatbots, can improve patient-reported outcomes related to decision making and knowledge in the pretest phase of genetic services. Participants identified barriers to in-person encounters, including travel time, accessibility, childcare, and physical discomfort in waiting rooms. They also expressed difficulty in finding and accessing peer support, educational resources, clinical trials, and specialized providers using traditional models of care.<br /><br />Participants highlighted the need for personalized care and a desire for access to their healthcare information, including medical charts and intake forms. They envisioned a digital tool that could act as a "digital binder" for their medical data, making it reviewable and shareable.<br /><br />Overall, the findings suggest that digital tools can supplement a patient's healthcare journey and enhance patient empowerment and patient-centered care. Participants emphasized the importance of tailoring digital tools to patient preferences and using them to supplement face-to-face encounters with providers.<br /><br />This research provides insights that can inform the implementation and evaluation of digital health tools in genetics service delivery. The study was funded by the McLaughlin Centre, University of Toronto, and the Canadian Institutes of Health Research Project Grant - Bridge Funding.

Asset Subtitle

Presenting Author - Daniel Assamad, MHSc; Co-Author - Saumeh Saeedi, BSc.; Co-Author - Sonya Grewal, HBSc; Co-Author - Vedika Jha, BSc.; Co-Author - Stephanie Luca, MA; Co-Author - Marc Clausen, MA; Co-Author - Angela Shaw, MHSc; Co-Author - Whiwon Lee, MSc, CGC; Co-Author - Yvonne Bombard, PhD; Co-Author - Robin Z. Hayeems, PhD; Co-Author - Genetics Navigator Study Team, N/A; Co-Author - Genetics Navigator Study Team, N/A; Co-Author - Genetics Navigator Study Team, N/A;

Meta Tag

Counseling

Education

Ethical Legal and Social Issues

Genetic Testing

Policy Issues

Psychosocial Counseling Issues

Psychosocial Issues

Co-Author Saumeh Saeedi, BSc.

Co-Author Sonya Grewal, HBSc

Co-Author Vedika Jha, BSc.

Co-Author Stephanie Luca, MA

Co-Author Marc Clausen, MA

Co-Author Angela Shaw, MHSc

Co-Author Whiwon Lee, MSc, CGC

Co-Author Yvonne Bombard, PhD

Co-Author Robin Z. Hayeems, PhD

Co-Author Genetics Navigator Study Team, N/A

Presenting Author Daniel Assamad, MHSc

Keywords

digital tools

genetic services

patient-reported outcomes

barriers

peer support

personalized care

healthcare information

digital binder

patient empowerment

implementation