What if the most important expert in a research project isn’t in the laboratory?
Through the Bionics Institute’s Community Involvement (CCI) Program, people living with conditions such as dementia, Crohn’s disease, arthritis, epilepsy and chronic pain are helping shape the future of medical research.
Facilitated by Dr Sally Herring, the program brings researchers together with people who have firsthand experience of living with challenging medical conditions. Their lived experience provides insights that no textbook or laboratory can offer, helping researchers ask better questions, identify unmet needs, and design research that is more relevant, practical and impactful.
Although still in its early stages, the program is already making a difference.
Over the past year, researchers, consumers and national advocacy organisations have come together to establish Community Advisory Committees, engage with individual lived experience expertise, facilitate workshops and begin to build lasting partnerships. One example is the Vagus Nerve Stimulation Centre of Excellence at Bionics Institute, which now incorporates consumer expertise across all arms and phases of development in its groundbreaking research programs.
Consumer insights have already directly influenced the design of a potential next stage Crohn’s disease clinical trial, inspired new ideas and indications for medical device development and highlighted priorities that researchers may otherwise have overlooked. Consumers have provided an open and honest window into their lived experience, educating and linking researchers with the real-world meaning of their work. Researchers have shared their research ideas and progress and are feeding back the impact of consumer expertise on the research to come.
The response has been overwhelmingly positive.
Researchers are seeing the value of involving consumers from the outset, while advocacy organisations are embracing the program as a model for meaningful collaboration between researchers and the communities they serve.
As interest continues to grow across the Institute, so does the opportunity. The work of researchers and consumers to date has established a strong foundation at Bionics Institute, demonstrating how consumer involvement can strengthen research at every stage, from early ideas through to clinical translation. The next challenge is ensuring more research teams, and more consumers can benefit from this approach.
By embedding lived experience into the research process, the Bionics Institute is helping create better science and better outcomes for the community. Consumer and community involvement is becoming more than a research initiative; it’s helping shape a culture where discovery is driven not only by scientific excellence, but by the people research is ultimately designed to help. Dr Sally Herring