The power of lived experience: how everyday Australians are helping change health research
A growing number of Australians are seizing the chance to have their say in the health research that affects them.
When Associate Professor Megan Teychenne embarked on her new research project to reduce the symptoms of postnatal depression, she wanted to involve people who had been at the coalface.
She established a project advisory committee, bringing mothers, health professionals and researchers together as equal members to develop the ‘Food, Move, Sleep (FOMOS) for postnatal mental health’* program.
Consumers involved in the project – in this case, mums with experience of postnatal depression –provided early and in-depth feedback on intervention materials being developed, including the program website, SMS content, Instagram pages, and recruitment materials. Their perspective, embedded in their lived experience, has been instrumental in shaping the project.
“Some of the feedback we heard from mothers was that the information on our website should be bite-sized and easy to read, and that we should include diverse images of women who represent all shapes and sizes,” Associate Professor Teychenne said.
“We also learned that videos with captions are useful as they increase accessibility and can be watched discreetly – such as during night-time feeds.
“Without consumer advisors involved in this stage of the research process, we wouldn’t have received this vital feedback.”
Consumer involvement in research is becoming increasingly valued, particularly in the health field. The Institute for Physical Activity and Nutrition (IPAN) at Deakin University has embraced the concept through the establishment of the IPAN Consumer Network.
The network is designed for people of all ages and backgrounds to share their experiences – helping to design, develop and deliver research that can more readily be adopted in the real world.
“What we want to do is build a vibrant community of individuals from diverse backgrounds who share a common interest in making a difference in quality health research,” IPAN Director Professor Jo Salmon explained.
“We understand that people living with various health conditions can sometimes feel alienated or powerless about aspects of their experience, so our Consumer Network is one way we can give people a voice and make the research more relevant to them.”
The benefits of consumer involvement in research extend beyond research outcomes. Individuals have reported positive effects on their own skills and knowledge.
Consumers have reported feeling that their input was acknowledged and valued by researchers, creating a genuine sense of contributing to the research project.
One of the FOMOS consumers puts it this way: “It really is a privilege to be a consumer advisor and contribute to the development of this research project. Being able to use the challenges I’ve experienced to better equip and support postnatal women in a highly vulnerable season of life makes it all worth it.”
Others found their involvement led to the acquisition of new skills and knowledge about postnatal depression, as well as the research process itself.
How to join the IPAN Consumer Network:
We’re inviting Australians both in good health and with lived experience of various health conditions to get involved in the world-leading research conducted at IPAN. The experiences and unique insights of IPAN Consumer Network members will help shape interventions, improve outcomes, and enhance the understanding of health conditions.
Interested? Visit our website and complete the registration form.
*The FOMOS project is funded through a five-year National Health and Medical Research Council (NHMRC) Emerging Leadership Investigator Grant (APP1195335). Read more about the FOMOS project at the Institute for Physical Activity and Nutrition (IPAN) here.