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

Abstract

Introduction A lack of culturally appropriate genetic information prevents the British Pakistani community from engaging with genetic services. The GENE-Ed project focussed on the development of an educational app with and for the Pakistani community. A secondary aim was understanding how to engage the community in research. Methods We used an iterative co-design and co-creation approach including four phases to develop the Gene app. Phase 1 included seven interviews with community members to explore genetics understanding and define the requirements. Phase 2 included reviewing smartphone apps and research on digital patient-facing interventions for genetics understanding. Phase 3 included developing the app and obtaining initial feedback. In Phase 4, feedback was obtained from five community members using the System Usability Scale (SUS), a bespoke survey and observations. Results Four themes were identified in the interviews: current awareness of genetics; consanguinity, religion and cultural influence; presenting genetics information in a new digital resource and dissemination; information-sharing and uptake. The reviews highlighted an absence of culturally sensitive, accessible and evidence-based digital resources. Initial feedback included altering the animations and images within the app and simplifying the text. The mean SUS score was 87, indicating excellent usability. The written information, animations and videos were acceptable to participants, and they tended to trust the information in the app. During feedback, community members responded well to different methods but struggled with written open-ended survey questions. Conclusion The co-design approach was essential to developing an acceptable resource for the British Pakistani community. Future clinical testing is needed.

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