Advocating for lived experience first in translational research

29 September 2023

Of all her professional roles, Anja Christoffersen sees her current one, as Founder and Executive Director of Champion Health Agency, as having the most potential to impact equity and quality of life for people living with disability and chronic illness.

“In this role, my lived experience comes first, as I represent others with disability and chronic illness and their carers to access opportunities that create transformative change,” Anja said.

Anja was born with a rare congenital disability affecting most of her body’s systems. She has vast experience with the health care system. Before starting Champion Health Agency in 2021, Anja had accumulated extensive experience in consumer representative roles for government agencies, hospitals and health services, not-for-profits and education departments, alongside her professional career and a Master of Business Administration (Health Services Management and Entrepreneurship).

“Earlier in my life, I thought I could create positive change by becoming a doctor. But unfortunately, that career path was not possible given how I was impacted by my life-long disability,” Anja said. “But I realised that I can make a more profound difference and help more people by advocating as a consumer representative for new health care improvements and models of care.

“Establishing Champion Health Agency, I have become the ‘middleman’ or woman between consumers wanting to create positive change and researchers looking to involve consumers in their projects.

“I work compassionately with many different people’s needs and help them navigate a lot of barriers to ensure they get treated with respect, paid fairly and have access to professional opportunities,” Anja said.

While Anja was co-leading the development of a co-design framework for Metro North, she connected with the team at Health Translation Queensland (HTQ).

“HTQ was considering ways to deliver co-design training for Queensland researchers. They engaged me to run two workshops on the topic,” Anja said.

“Over 500 researchers registered for the first online workshop, showing the interest in understanding co-design. Researchers asked some practical questions about how to find consumers and compensate them fairly.

“After the first workshop, we ran another where researchers and their health consumer partners attended together in person. We saw the most profound shifts during this session. One researcher arrived with an idea about how to co-design their project. After listening to the consumer’s story about the gaps in care, the researcher decided to change the focus of their research entirely.”

Anja is also part of the HTQ-led Consumer and Community Involvement (CCI) in Research Alliance.

“I think HTQ has a pivotal role in bringing together research institutes, universities, hospitals and health services and consumers to improve translational research in Queensland, and that includes lifting the standard when it comes to CCI.

“Health innovation needs to be consumer-led,” Anja said. “They are the ones living through the challenges and who want to be part of the solution.

“I would like to see HTQ’s CCI in Research Alliance develop a framework for public reporting about CCI in research. If research institutes had common metrics to report, it would help to create greater awareness and visibility of where genuine CCI is happening.”

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