Why is this important?

Marrying close relatives is common in the British Pakistani community, increasing the risk of genetic conditions in children. A genetic condition is a health problem caused by changes in a person’s genes, which can be passed down from their parents.

 

Many families struggle to understand genetic information, especially when it is not presented in their language or in culturally sensitive ways. Providing easy to understand and culturally appropriate genetic information can help families:

 

• make informed decisions about health and family planning
• decide when to access genetic services
• better understand information given to them during their appointment
   

 

What are we trying to do?

We are trying to improve access to culturally appropriate genetic information for the British Pakistani community. We are doing this by developing a smartphone app called Gene (جِین). This app is being co-designed with and for the community, working in collaboration with Blackburn with Darwen Council. It is an educational resource and includes example videos of clinical consultations, a glossary and animations. The app is available in both Urdu and English and has accessibility features like changing the size of the text.

 

 

How are we doing it?

We are using an iterative co-design and co-creation approach. The prototype Gene (جِین) app was designed through four phases.

 

• We first interviewed seven community members to explore genetics understanding in the community to define their requirements. 
• In Phase 2, we reviewed existing smartphone apps and research on digital patient-facing interventions for genetics understanding. This helped us to understand what was already available.
• In Phase 3 we developed the app and got some initial feedback from community members.
• Lastly, in Phase 4, we ran a community feedback session in Blackburn and gathered formal feedback from five people using surveys and observations. We found that the written information, animations and videos were acceptable to community members, and they tended to trust the information in the app. It was also rated as having ‘excellent’ usability.

 

Next, we plan to explore how we can test the app in an NHS genetics service, including how it might help improve understanding of genetics, trust, and engagement with genetic services by patients. We are also working on a small release with some community-based workers.

 

 

Who are we working with?

Our project unites researchers, clinicians, and British Pakistani community members. Professor Ang Davies leads the team.

 

The core team members include:

• Naz Khan (senior genetic counsellor)

• Dr Alan Davies

• Professor Dawn Dowding

• Dr Norina Gasteiger

• Dr Martin Eden

• Syed Mustafa Ali.

 

We also work closely with our Blackburn with Darwen Borough Council collaborators Uzmah Hussain and Hannah Dean, Ms Amy Vercell (The Christie NHS Foundation Trust), and Dr Ramona Moldovan (NIHR Manchester Biomedical Research Centre).

 

 

Achievements so far:

• Co-developed a prototype of the Gene ( جِین)  app, which is acceptable to the British Pakistani community.
• Published a review of the existing genetics apps, which has been accessed more than 3500 times: https://link.springer.com/article/10.1007/s12687-022-00579-y
• Undertaken a systematic review of articles describing digital technologies that assist with understanding genetics: https://link.springer.com/article/10.1007/s12687-023-00648-w
• Presented this project at an international conference, informing a publication on engaging the South Asian community in research: https://exchanges.warwick.ac.uk/index.php/exchanges/article/download/1566/1301/8805

 

 

Contact info

 

Digital Health Theme Progamme Manager

 

Dr Ross Atkinson

ross.atkinson@manchester.ac.uk

or:

Prof Angela Davies

angela.davies@manchester.ac.uk