Background
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
Delivery
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
