Development of a Clinical Service Plan for the Genetic Services of Western Australia

Community survey

If you have been referred to GSWA by a healthcare professional (general practitioner or specialist) or have attended an appointment with GSWA for yourself or for someone you care for in the last 10 years, you can share your experience and ideas for the future in this Community Survey (hosted by the Health Consumers' Council (WA) Inc.).

• Your appointment may have been in-person at a clinic in Perth or in a regional town, via telehealth, or during an inpatient stay at a public hospital.
• The appointment(s) would have involved a geneticist, genetic counsellor, or both, and could have been related to familial cancer, a family history of disease, an increased risk result on prenatal screening, foetal anomaly diagnosis or monitoring, or related to other genetic disorders like (but not limited to) cystic fibrosis, muscular dystrophy, fragile X syndrome, long QT syndrome, or haemophilia.
• Please note that your referral or appointment must have taken place in the last 10 years (2014 or later) to be eligible for this survey.

You may also complete the survey on behalf of a community, peer support or consumer advocacy organisation that supports people living with genetic conditions who may have attended GSWA.

We greatly appreciate your time and contribution in helping us to improve the experience of people impacted by a genetic condition, especially as we understand that living with a genetic condition might be challenging and cause anxiety.

Community focus groups

We are also conducting focus groups in August and September 2023. If you have been referred to or have attended an appointment with GSWA for yourself or for someone you care for, you are invited to submit an expression of interest to participate in these activities.

Please note this information will be held by the Health Consumers’ Council (WA) Inc. specifically for the purpose of contacting you to be further involved. Your contact details will be destroyed at the conclusion of the project. 

We are seeking a diverse representation of people to participate in the focus groups, including (but not limited to):

• Individuals who have attended GSWA in the last 10 years who identify as being of Aboriginal or Torres Strait Islander origin
• Individuals who have attended GSWA in the last 10 years who identify as being from a culturally and linguistically diverse background
• Individuals who have attended GSWA in the last 10 years who live in a rural, regional or remote location in WA

Please contact the Health Consumers’ Council on (08) 9221 3422 or info@hconc.org.au to find out more about these activities. 

Clinician and support service survey

We would also like to hear from:

• Health professionals who refer patients to GSWA
• Health professionals who manage patients with genetic conditions but do not currently refer them to GSWA
• Support service staff (e.g. interpreters) who assist people during their appointments at GSWA

If you fall into one of these categories, you can share your experience in the Clinician and Support Service Survey.

Primary care focus group

An online focus group with primary care providers will be held on Tuesday 29 August 2023 from 7.00 – 8.30 pm. This focus group will aim to understand primary care providers’ experiences with referring patients to GSWA as well exploring participants’ opinions on the future opportunities and priorities for the service.  If you work in primary care in WA (even if you do not currently refer to GSWA), you are invited to register to participate in this activity.

Please note this information will be held by the Office of Population Health Genomics, WA Department of Health  specifically for the purpose of contacting you to be further involved. 

We will be holding an online workshop on Thursday 12 October 2023 to explore the themes raised through the previous engagement activities and identify future priorities for GSWA.

The workshop will last approximately 4 hours and will be held via Zoom. If you require an interpreter or other form of assistance, please contact the Health Consumers’ Council (WA) Inc to discuss alternative participation options at (08) 9221 3422 or info@hconc.org.au.

We welcome expressions of interest (EOI) from the following people:

• individuals who were referred to or attended an appointment at GSWA between 2014 and 2023 (including parents and carers of patients)
• health professionals (including clinicians who manage patients with genetic conditions, clinicians who have referred patients to GSWA, and GSWA staff members)
• support service staff who assist patients during their appointments with GSWA
• representatives from community, peer support or advocacy groups that support people living with genetic conditions.

We are seeking a diverse representation of stakeholders for this activity, and will invite participants to attend the workshop based on EOIs received. Please register your details below if you are interested in participating and we will confirm your attendance shortly thereafter.

Consumers and community organisations

• Register your details (external site).

Health professionals and Health support service staff

• Register your details (external site).