New study explores digital technologies to empower genetic services patients
A new study, conducted by researchers from The University of Manchester and the National Institute for Health and Care Research (NIHR) Applied Research Collaboration Greater Manchester (ARC-GM) in collaboration with a genetic counsellor, explored the potential of using digital technologies to educate and empower patients who engage with genetic services.
Researchers reviewed 24 studies from eight databases, shedding light on the existing patient-facing digital technologies used for genomics/genetics education and service engagement.
The majority of the studies were conducted in the United States, with a significant portion taking place within clinical settings. The findings revealed promising results in terms of educating patients and their families, as well as facilitating engagement with genetic services.
However, few of the studies were community-based or focussed on empowering patients, more than half of the interventions were also web-based tools, highlighting that future interventions could incorporate interactive features and focus on engaging underserved communities.
Norina Gasteiger, ARC-GM funded PhD fellow, lead author on this paper, and the recent winner of the 2023 Postgraduate Research Student of the Year Award for the School of Health Sciences at The University of Manchester commented:
“This work has highlighted a need for engaging underserved communities or consanguineous couples who may be at-risk of genetic disorders. Community engagement and co-design work are key to producing digital interventions that are useful, empowering and culturally sensitive.”
This systematic review is part of a project to co-design an educational genetics app for the Pakistani community in the UK. Researchers are working with genetic counsellor, Naz Khan, Blackburn with Darwen borough council and the local community. The aim is to ensure that individuals from all backgrounds have access to vital genetic services and information.
Ang Davies, Professor of Clinical Bioinformatics and Healthcare Science Education at The University of Manchester, expressed the significance of co-production in the project:
“This project embraces team science, combining expertise in genetic counselling, public health, digital health, app development and our community participants. Their ongoing involvement has been fundamental to defining the features and design of the app and steered the production of content in both English and Urdu.”
Read the research results in full here.
Published 11/07/2023