In 2020 Articulous worked with Genomics QLD to design, facilitate, and report on engagement with patient groups and other stakeholders to develop a scope for the proposed Genomic Support Network for Queensland Patients, ensuring:

• patient group and other key stakeholder buy in
• unity of direction and purpose

The purpose was to scope a Genomic Support Network for Queensland Patients that would:

• Advise government decision makers on patient-centric genomics and genetics policy settings
• Help families and patients navigate access to appropriate genetic and genomic health services and connect them to appropriate patient support services.

We developed a scope for a Genomic Support Network for Queensland Patients which included:

• The purpose, mission, vision and outcomes for a Genomic Support Network for Queensland Patients, endorsed by relevant patient groups in Queensland
• A briefing note about the proposed service which articulated:
• Why a genomic support network for Queensland patients
• What the support network is
• How it works and where is it best situated
• What value it delivers

Articulous conducted desktop research and key stakeholder interviews. We then ran a deep dive stakeholder forum to help scope out and develop the briefing note. The digital forum was attended by patient support groups who were asked to do pre-reading and answer a short survey to help them understand the purpose of the session.

Key stakeholders included:

• CHQ
• Clinical geneticists
• Genetic counsellors
• Rare patient groups
• Mainstream patient groups
• Mainstream clinicians