Genomic Support Network
Scoping a Genomic Support Network for Queensland Patients
This community-led project will 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.
The implementation of genomic medicine into healthcare shines a light on a range of challenges for patients and families navigating the health system.
Issues such as equity and timeliness of access to healthcare, the challenges of patients navigating a complex health system in a rapidly changing environment, workforce and patient education in genomic medicine, consent, data ownership and access are just a few of the issues that need consideration if our healthcare system is to truly deliver on the promise of personalised medicine.
To address these issues effectively, we need strong and informed patient voices in the policy making process, and a mechanism for supporting patients to access the right care, at the right time, in the right place.
Project leaders engage with and draw upon the expertise of partners within universities, research institutes and hospital and health services around Queensland.
Ms Louise Healy, Vice President – Metabolic Dietary Disorders Association; Queensland Genomics Community Group
Dr Erin Evans, Health Consumers Queensland; Queensland Genomics Community Group
Ms Jessica Bean, Health Consumer; Australian Genomic Health Alliance’s Community Advisory Group; Queensland Genomics Community Group
Ms Deb Robins, Regional health consumer and carer; Co-Founder – Duchenne Foundation, patient reviewer for the British Medical Journal
Miranda Vidgen, QIMR Berghofer
Priya Ramarao-Milne, QIMR Berghofer
Kate Sullivan, Queensland Genomics
Katrina Cutler, Queensland Genomics; Queensland Genomics Community Group