Patient Voice Hub redefines consumer engagement with PBAC and MSAC

An online platform developed to empower patients, caregivers, and advocacy organisations in contributing to Australia’s health technology assessment (HTA) processes, all in under 20 minutes, is being launched by the Patient Voice Initiative.

Timed strategically with the release of the Pharmaceutical Benefits Advisory Committee (PBAC) March 2024 meeting agenda, which signifies the commencement of the consumer comments phase, the Patient Voice Hub emerges as a pivotal tool for informed engagement.

Consolidating resources cultivated by the Patient Voice Initiative over the past five years in collaboration with the Consumer Evidence and Engagement Unit of the Department of Health and Aged Care, the Hub stands as a user-friendly reservoir curated explicitly for individuals constrained by time yet rich in firsthand experiences or patient community insights.

Jessica Bean, Chair of the Patient Voice Initiative, highlighted the diverse support this initiative offers.

“The Patient Voice Initiative provides capacity building and support for a range of needs across Australian patient communities. We saw at HTAi 2023 Adelaide, that some patients and their representatives really value a deep dive into HTA to achieve their goals. But a large part of the community can’t engage with HTA this way or don’t want to due to other priorities. It’s essential to have tools that enable them to be seen, heard and valued too,” she stated.

Ms Bean, who herself lives with cystic fibrosis, acknowledged the complexities patients encounter while navigating healthcare systems.

“I know how much I had to find out about how the system worked when innovative therapies for my community were first being considered by PBAC. The Hub makes it much faster and easier for patients. The Patient Voice Hub has been designed so that it can respond to improvements to HTA in Australia which we want to see coming out of the HTA Policy and Methods Review and the Enhanced Consumer Engagement Co-Design work,” she added.

Utilising the etrainu online training platform, the Hub caters to individuals seeking HTA insights without necessitating extensive training, recognising the inherent expertise within patient communities.

Anticipating future expansions, the Hub will soon introduce topics focusing on rare diseases and patient experience data early next year, followed by six additional topics in 2024 for deeper exploration.

Accessible to all without cost, a straightforward registration process unlocks the wealth of resources within the Hub. Interested individuals can gain more information through an introductory video or by directly exploring the Hub.

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