NEWS & EVENTS

Engaging consumers and community in genomics healthcare and research

29 August 2022

As Queensland Genomics laid the foundations for genomics in Queensland's healthcare system and associated research, its Community Advisory Group (the Queensland Genomics Community Group) was empowered and funded to identify and lead projects of its own, aimed at improving access and understanding of genomics services for all Queenslanders.

A recent publication in Frontiers in Genetics explores the Queensland Genomics Community Group structure and function and its recommendations for similar groups based on its members’ perspectives.

A dual purpose

Queensland Genomics was a five-year program (2016–2021) of initiatives and research projects focused on building whole-of-system capacity and capability in genomics. The Queensland Genomics Community Group brought together health consumers, clinicians, health researchers and administrators to help inform projects and build capacity across the healthcare community.

The group met quarterly during the life of the Queensland Genomics program and had a dual purpose, which was to:

• Provide advice to Queensland Genomics projects
• Develop and lead community-focused projects.

Achievements

Queensland Genomics Community Group's community-led projects included:

• Genomics Information Toolkit – a resource to assist patients to engage with and access genomics health services and testing in Queensland.
• Genomics Consumer Support and Advisory Group for Queenslanders – developed the scope for a consumer support service – which is currently being considered by Queensland Health for implementation.
• Genomics Literacy in Multicultural Queensland – provided training in genomics to bilingual health workers and medical interpreters, including an evaluation published here.
• Public education sessions – partnered with Health Consumers Queensland to build genomics literacy.
• Survey of Genomics Literacy in Queensland’s Health Consumers – survey of health consumers, published here.
• Mapping the Patient Journey – compared patient journeys across different jurisdictions.
• Community Advisory Group Overview Publication – built evidence for best practice consumer involvement.

Lessons learned

In reviewing the Queensland Genomics Community Group’s activities, the members identified several recommendations for similar groups. In particular, their experience highlighted the importance of:

1. Diversity in the members’ skills and experience
2. Adequate resourcing
3. The group’s ability to self-determine its direction.

Ultimately, the group’s self-evaluation and members’ perspectives provide useful insights for other initiatives seeking to undertake consumer and community engagement in genomics.

Read the full article: “Community input in a genomic health implementation program: Perspectives of a community advisory group” Frontiers in Genetics
https://doi.org/10.3389/fgene.2022.892475

For more information about the Queensland Genomics Community Group, please email Katrina Cutler.

Further background

In 2020, Queensland Genomics joined Health Translation Queensland (then Brisbane Diamantina Health Partners) to ensure the program had strategic support during its final year. Building on the work of Queensland Genomics, Queensland Health established the Genomics Executive Working Group to create Queensland’s genomics policy position and explore options for ongoing activity and investment in genomics. More details.