Moving the needle from intention to action: Positioning patients as strategic partners in health policy

As Australia nears a federal election, the question of patient advocacy in health policy has never been more pressing. In this Health Industry Hub pre-election senior leadership series, Deidre MacKechnie, CEO of Australian Patient Advocacy Alliance (APAA) and Leanne Raven, Chair of APAA and CEO of Crohn’s and Colitis Australia (CCA), challenge the inertia that has kept patient perspectives on the periphery rather than at the core of health policy decisions.

Over the past five years, the patient voice has gained momentum, but the reality remains stark: patient perspectives are still not structurally integrated into health policy and Health Technology Assessment (HTA) decision-making. Without it, policies continue to be disconnected from the very people they are designed to serve.

A recent international study of HTA representatives, including those from Australia, exposes a troubling contradiction. While the theoretical value of patient input is widely accepted, HTA committees continue to question its “genuine value” and how it can be practically incorporated. So, what is required of government to move the needle from intention to action?

Another study suggests that HTA bodies expect patient advocacy groups – often the most under-resourced organisations – to take on the responsibility of generating and submitting patient preference data. But should they bear this burden alone?

The medical community and specialty societies have a pivotal role in shaping the narrative, ensuring that patient experiences are not seen as anecdotal but as indispensable data when it comes to HTA decision-making.

With an election looming, what steps should be taken next to advance the goal of positioning patients as strategic partners in health policy?

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