Aims
To maximise patient benefit in a large federally funded research program by establishing an independent, autonomous consumer advisory panel. This presentation addresses a health policy concern raised by Australia’s Health Technology Assessment (HTA) agencies and how patient engagement early in the research can improve patient and research outcomes.
Methods
From inception, the research team included a senior consumer leader who designed the consumer engagement approach prior to gaining funding for the research program. The entire research team participated in briefings on the value of a consumer partnership model and embraced this approach. A competitive recruitment process to attract the right consumers was executed and an independent panel of experienced consumer representatives was established. The panel has operated independently over the course of the research program providing advice, insights, and direction for the duration of the program.
Results
The panel has actively participated in the research program and have directly influenced research methodology for Horizon Scanning to incorporate patient perspectives and priorities. Panel members have presented at the inaugural Horizon Scanning Forum in Canberra and participated in the Medicines Australia Health Technology Assessment Review, advocating for the role of consumers in the review and providing a submission outlining the lack of consumer engagement in the current HTA processes. The panel is also leading research and preparing publications reflecting the work undertaken.
Conclusion
Research of the future must feature strong and genuine consumer partnership. Models that deliver true consumer partnership are novel and provide leverageable learnings for the research community, both in panel establishment and the results achieved. We have demonstrated how an independent advisory panel can be autonomous and effective across a large federally funded program of work, providing opportunities for informed consumer input and recommendations to drive government funded research.