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When it comes to decision-making in healthcare, how much consideration should be given to patient voice? Health indicators, including quality of life, are usually assessed solely by clinicians—but this approach can lead to noncompliance, reports of dissatisfaction and even, for marginalised groups, medical discrimination.

Similar challenges exist in the clinical trials space, where study participants rarely represent real-world patients. Clearly, accurate health assessments aren’t always easy.

The University of Adelaide is spotlighting two practices making a difference: data registries and Patient-Reported Outcome questionnaires (PROs).

According to cardiology researchers, cardiovascular registries are adding much-needed notes to the evidence spectrum—and PROs are empowering people with heart disease to tell their stories, be heard, and experience better wellbeing.

With more reliable, ethical, and cost-effective healthcare in reach, we need to encourage wider use of these tools—and conduct further research to measure their impact on care.

Join the experts in getting to the heart of it.

The presenters

Professor John Spertus is a renowned cardiologist—recognised as one of "The World's Most Influential Scientific Minds”—and the Lauer/Missouri Endowed Chair and Professor of Medicine at the University of Missouri-Kansas City, where he serves as Clinical Director of Outcomes Research at Saint Luke’s Mid America Heart Institute. He is also an Affiliate Professor at the University of Adelaide, and co-investigator on several Australian National Health and Medical Research Council grants.

Professor Frederick Masoudi is the Chief Science Officer and Vice President of Clinical Research and Analytics at Ascension—one of the largest private health systems in the United States. He is internationally recognised for his achievements, receiving the American Heart Association (AHA) Quality of Care and Outcomes Research (QCOR) Scientific Council Distinguished Service Award and the AHA QCOR Outstanding Lifetime Achievement Award. Professor Masoudi currently teaches at Dell Medical School at the University of Texas at Austin and the University of Colorado’s Anschutz Medical Campus.

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