In this blog series we will be featuring our award winners and highly commended recipients from the Faculty’s ‘Outstanding Contribution to PPIE’ awards. The awards showcase inspirational and outstanding commitment to PPIE that has made a positive difference to our community and highlights the amazing events, activities, people and groups from across the Faculty.  

Our latest blog in this series features the team behind ‘Gene’, an app to improve genetics literacy co-designed with the British Pakistani community in Blackburn. The Gene team were highly commended in the inclusive category at the 2024 PPIE Awards. 

A research team from the University has developed an innovative way to improve access to culturally sensitive genetic information within British Pakistani communities.  

The Gene app was co-designed through a unique collaboration between researchers, healthcare professionals, and members of the South Asian Pakistani community in Blackburn with Darwen. At the heart of the project is a commitment to addressing a long-standing gap in genetic education and awareness, particularly among individuals who face language and literacy barriers. Traditional leaflets and written materials have often been insufficient, especially for those who do not speak English or cannot read written Urdu. 

Working in partnership with NHS England, Blackburn with Darwen Council, and genetics counsellor Naz Khan, the team developed a multilingual app that delivers engaging, accessible content through videos and animations in both English and Urdu. The app was shaped through a series of iterative co-design sessions with community members, ensuring that the final product was not only informative but also culturally appropriate and user-friendly. 

Recognising the urgent need for better genetic literacy and the cascading of information within families, they secured initial funding from Blackburn with Darwen Council to develop a prototype. Dr. Alan Davies led the app development, supported by Professor Dawn Dowding and Dr. Norina Gasteiger, who contributed digital health expertise and conducted much of the qualitative research. 

The team also collaborated with Nifty Fox, a professional animation company, and the University of Manchester’s Media Services team to produce a suite of bilingual educational materials. These resources address complex topics such as consanguineous marriage and the role of genetic services in supporting families. 

Despite limited resources, the Gene app project has achieved significant milestones. These include a fully functional prototype, a poster presentation at the 2022 European Human Genetics Conference in Austria, and three published papers in the Journal of Community Genetics. The app has also been adopted as a teaching case study and is now part of the National Institute for Health and Care Research Applied Research Collaboration Greater Manchester. 

Currently, the team is preparing for the app’s wider dissemination, with plans to equip health visitors with the tool as part of an upcoming evaluation. The project’s inclusive, iterative co-design approach and its bilingual content have been hailed as key innovations, setting a new standard for community-led digital health interventions. 

Find out more: 

• 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 

To find out more about PPIE: watch our short film, sign up to the monthly Public Engagement Digest, visit the PPIE blog, or contact srbmh@manchester.ac.uk.      

To read more about other PPIE Award winners visit here. 

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