Incorporating patient data in health technology funding decisions

Published on 04 February 2026
An Adelaide University Building.

Two projects have been successful in the latest announcement of the Medical Research Future Fund (MRFF) grants.

Professor Tracy Merlin, Dean of the School of Public Health, and Professor Nicole Pratt, School of Pharmacy and Biomedical Science, have each received more than $1.9 million as part of the MRFF 2025 Incorporating Patient Data in Health Technology Assessment Decision Making grant.

Professor Merlin will lead the Societal, Health and Patient Experiences in HTA (SHAPE HTA) project.

As part of the project, Professor Merlin and her team at Adelaide Health Technology Assessment (AHTA) are partnering with patients nationally and internationally to co-design a new framework which will be used to help assess new highly specialised health technologies, like gene therapies and genomic tests, for funding decisions.

“Technologies like these are hard to evaluate as they often affect people with rare diseases or conditions and so there is limited clinical trial data available,” said Professor Merlin.

“In addition, the impacts of these technologies are usually felt beyond the immediate patient, reaching close family members and carers, and affecting outcomes beyond health, such as education, employment and carer burden, and the 'value of knowing’—the value of having a diagnosis and reducing the diagnostic odyssey.

“The SHAPE project embeds patient outcomes, experiences and real-world data into novel health technology assessment processes to support fairer, faster, and more informed funding decisions. The aim is to improve equity of access to innovative health care while maintaining a sustainable health system.”

Professor Pratt will lead the EValuating long-term Effectiveness using Real world Evidence of highly Specialised Treatments – Cancer (EVEREST-C) project.

“Our goal is to provide decision-makers more accurate, patient-focused information to support smarter, fairer funding choices for cancer medicines” she said.

“EVEREST-C will develop an easy-to-use living-library of real-world evidence about how medicines used in the treatment of cancer work in everyday life, not just in clinical trials. This platform will prioritise inclusion of outcomes that matter most to patients to ensure these are considered when funding decisions are made.”

Adelaide University Deputy Vice Chancellor - Research and Innovation, Professor Anton Middelberg FTSE FNAI, congratulated the researchers on the successful funding outcomes.

“The use of technology in health to aid decision making is an important area of research,” he said.

“This research is aimed at changing the way health technologies are assessed for funding decisions under the PBS and Medicare so that decision-making is more equitable and reflects those aspects of health and quality of life that patients value the most.”