Co-designing ‘Gene’, a smartphone app for genetics education and empowerment with and for the Pakistani community::A methodological summary of the GENE-Ed project

Background: The British Pakistani community experiences higher rates of genetic disorders, primarily due to increased rates of consanguinity. Multiple barriers, including poor genetic literacy and a lack of culturally appropriate and accessible information, prevents this community from engaging with genetic services. Objective: In 2021, we established the GENE-Ed project, which aims to develop a new resource with and for the Pakistani community to help distribute accessible genetic information and empower families to make informed decisions about childbearing, genetic counselling and carrier testing. A secondary aim is to understand how to best engage the community in research, as they are often underserved. Methods: We used an iterative co-design and co-creation approach, working in collaboration with a genetics counsellor established within the British Pakistani community in Northwest England, community organisations and public contributors. Four phases were conducted to develop a prototype of the Gene smartphone application. In Phase 1, we conducted seven interviews with community members to explore genetics understanding and define the requirements for a new resource. Data were analysed thematically. In Phase 2 we conducted two reviews on existing smartphone apps and research reporting on digital patient-facing interventions for genetics understanding and empowerment. Phase 3 included developing the app using the MoSCoW requirement prioritisation method, paper and high-fidelity prototyping. Two community members also gave feedback. In the last Phase, feedback was obtained from five community members using the System Usability Scale (SUS), a bespoke survey and observations. Quantitative data were analysed descriptively, while a content synthesis was conducted on qualitative data. Results: Four themes were identified in the Phase 1 interviews: current awareness of genetics, consanguinity, religion and cultural influence, presenting genetics information in a new digital resource and dissemination, ...