Clinical Research Directory

Improving Genetic Medicine for Ethnic Minority Groups

Sponsor: Guy's and St Thomas' NHS Foundation Trust

Summary

A key aim of the nationally commissioned Genomic Medicine Service (GMS) in England is to encourage equity of access between different patient groups, however, there is evidence to suggest that it is being under-utilised by ethnic minority groups. The aim of this study is to explore how ethnic minority populations interact with the GMS and to identify changes that would promote equity within those services. This is a mixed-methods study using interviews and group discussions with lay people, community organisers and charity workers, people who have had direct or indirect contact with the genomic medicine service and professionals within the service. By including potential service users, service users and professionals in this work and allowing people to share their experiences in whatever method feels most comfortable to them, we aim to get a broad understanding of the lived experience of everyone involved in these pathways which will be key to gaining a holistic understanding of how they are working in real world settings. The primary outcome measure will be an increased understanding of the experiences of people from ethnic minority groups navigating the genomic medicine space. The secondary outcome measure will be an increased understanding of how experiences differ across and between ethnic groups. We intend to use our insights to recommend structural changes which will improve utilisation of the genomic medicine service by patients from ethnic minority groups.

Official title: Capturing Ethnic Minority Experiences of Genomic Pathways to Understand What Changes Are Needed to Promote Greater Equity Within the Genomic Medicine Service.

Key Details

Conditions

Locations (1)