The project

Community needs assessment for the genetic and rare disease community in WA had three purposes:

1. Understand the current needs of the community and any major gaps in the existing service system.
2. Define the outcomes that an ideal service system should create in support of this community.
3. Articulate what the key elements of that ideal service system should be to create those outcomes.

The objective

To inform how the Department of Health delivers services in the future and improves outcomes for people living with genetic and rare diseases.

The role we played

SVA’s role was to:

• Review and synthesise existing data and reports on genetic and rare diseases from the WA Department of Health to ensure findings align with current strategies including the WA Sustainable Health Review.
• Conduct research to understand the needs and evidence of best practice domestic and international approaches.
• Conduct stakeholder engagement via a series of focus groups and interviews. Stakeholder groups consulted included patient support organisations, genetic counsellors, peak organisations, Department staff and people living with genetic and rare diseases.
• Facilitate a theory of change workshop with the WA Department of Health.
• Develop and document key elements of service delivery based on research and gaps identified.
• Develop a high-level outcomes framework.

Project impact

The Department of Health has an evidence-based and future-focussed community needs assessment that is grounded in the voice of people living with genetic and rare diseases. The report will assist the Department to make informed decisions to improve how the health system provides services for this community.