TY - JOUR
T1 - An Accessible Communication System for Population-Based Genetic Testing
T2 - Development and Usability Study
AU - Coffin, Tara
AU - Bowen, Deborah
AU - Swisher, Elizabeth
AU - Lu, Karen
AU - Rayes, Nadine
AU - Norquist, Barbara
AU - Blank, Stephanie
AU - Levine, Douglas
AU - Bakkum-Gamez, Jamie
AU - Fleming, Gini
AU - Olopade, Olufunmilayo
AU - D’Andrea, Alan
AU - Nebgen, Denise
AU - Peterson, Christine
AU - Munsell, Mark
AU - Gavin, Kathleen
AU - Lechner, Rebecca
AU - Crase, Jamie
AU - Polinsky, Deborah
AU - Romero, Iris
N1 - Publisher Copyright:
© Tara Coffin, Deborah Bowen, Elizabeth Swisher, Karen Lu, Nadine Rayes, Barbara Norquist, Stephanie Blank, Douglas Levine, Jamie Bakkum-Gamez, Gini Fleming, Olufunmilayo Olopade, Alan D’Andrea, Denise Nebgen, Christine Peterson, Mark Munsell, Kathleen Gavin, Rebecca Lechner, Jamie Crase, Deborah Polinsky, Iris Romero.
PY - 2022/10
Y1 - 2022/10
N2 - Background: Genetic testing uptake is low, despite the well-established connection between pathogenic variants in certain cancer-linked susceptibility genes and ovarian cancer risk. Given that most major insurers cover genetic testing for those with a family history suggestive of hereditary cancer, the issue may lie in access to genetic testing. Remotely accessible web-based communication systems may improve awareness, and uptake, of genetic testing services. Objective: This study aims to present the development and formative evaluation of the multistep web-based communication system required to support the implementation of, and access to, genetic testing. Methods: While designing the multistep web-based communication system, we considered various barriers and facilitators to genetic testing, guided by dimensions of accessibility. In addition to conducting usability testing, we performed ongoing assessments focusing on the function of the web-based system and participant response rates, with the goal of continuing to make modifications to the web-based communication system as it is in use. Results: The combined approach of usability testing and expert user experience consultation resulted in several modifications to the multistep web-based communication system, including changes that related to imagery and content, web accessibility, and general organization of the web-based system. All recommendations were made with the goal of improving the overall accessibility of the web-based communication system. Conclusions: A multistep web-based communication system appears to be an effective way to address many potential barriers to access, which may otherwise make genetic testing difficult for at-risk individuals to participate in. Importantly, some dimensions of access were easy to assess before study recruitment, but other aspects of the communication system required ongoing assessment during the implementation process of the Making Genetic Testing Accessible study.
AB - Background: Genetic testing uptake is low, despite the well-established connection between pathogenic variants in certain cancer-linked susceptibility genes and ovarian cancer risk. Given that most major insurers cover genetic testing for those with a family history suggestive of hereditary cancer, the issue may lie in access to genetic testing. Remotely accessible web-based communication systems may improve awareness, and uptake, of genetic testing services. Objective: This study aims to present the development and formative evaluation of the multistep web-based communication system required to support the implementation of, and access to, genetic testing. Methods: While designing the multistep web-based communication system, we considered various barriers and facilitators to genetic testing, guided by dimensions of accessibility. In addition to conducting usability testing, we performed ongoing assessments focusing on the function of the web-based system and participant response rates, with the goal of continuing to make modifications to the web-based communication system as it is in use. Results: The combined approach of usability testing and expert user experience consultation resulted in several modifications to the multistep web-based communication system, including changes that related to imagery and content, web accessibility, and general organization of the web-based system. All recommendations were made with the goal of improving the overall accessibility of the web-based communication system. Conclusions: A multistep web-based communication system appears to be an effective way to address many potential barriers to access, which may otherwise make genetic testing difficult for at-risk individuals to participate in. Importantly, some dimensions of access were easy to assess before study recruitment, but other aspects of the communication system required ongoing assessment during the implementation process of the Making Genetic Testing Accessible study.
KW - accessibility
KW - genetic testing
KW - internet
KW - social media
UR - http://www.scopus.com/inward/record.url?scp=85144786054&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85144786054&partnerID=8YFLogxK
U2 - 10.2196/34055
DO - 10.2196/34055
M3 - Article
AN - SCOPUS:85144786054
SN - 2561-326X
VL - 6
JO - JMIR Formative Research
JF - JMIR Formative Research
IS - 10
M1 - e34055
ER -