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, information-sharing and uptake. The reviews in Phase 2 highlighted an absence of culturally sensitive, accessible and evidence-based digital resources on consanguinity and targeting the Pakistani community. The feedback gathered during Phase 3 included altering the imagery (e.g., icon) and colours within the app (e.g., to match NHS branding) and simplifying the text. In Phase 4, the mean SUS score was 87 (SD: 10.95), indicating excellent usability. The written information, animations, videos and content were acceptable to participants, and they tended to trust the information in the app. Community members responded well to the different methods used across the phases and were eager to engage in conversation about genetics. However, they tended to struggle with responding to written open-ended survey questions.

Conclusions:

The co-design and co-creation approach and collaboration with a trusted genetics expert in the community, was essential to developing an acceptable information resource with and for the British Pakistani community. Future testing is needed with males and older community members who play a central role in medical decision-making. Clinical Trial: Not applicable.