From participant to co-leader: Penelope's journey paves the way for community-driven research
From putting her hand up as a participant, to now being co-leader of a government-funded research project, Penelope McMillan has a long history of engaging with research throughout her healthcare journey.
“I’ve always been really aware that, particularly in these days where evidence-based medicine is the byword, nothing moves forward in medicine without research.”
“Any time I was invited to participate in research I said yes, even when it was quite inconvenient for me and involved changing medications and so on, because I wanted the field to move forward.”
Through these experiences as a participant, Penelope quickly realised that, particularly in the field of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), there was a concerning lack of research that was based on lived experience. This meant that research projects were sometimes created and run in a way that wasn’t as accessible for the participants as they could be and didn’t address the priorities that people with ME/CFS actually had about their care.
“There’s a limit to the degree that people without lived experience can infer what participants really need in order to be able to participate comfortably, safely, and willingly.”
With this in mind, the transition from participant to consumer advocate was a natural one, and Penelope was soon becoming involved in research projects in many different capacities.
“As a consumer, I have helped shape research right from developing the research question to now being a co-leader on a research project, and many activities in between.”
“My greatest impact came from a simple conversation with a researcher friend at a Health Translation SA (HTSA) event. I mentioned that I’d just been involved with a report about how the primary health sector ignores the access needs of people who are homebound, but that we were struggling to get the report much attention. This friend offered to share the report, Just Invisible by Ricky Buchanan, with her colleagues at Flinders University - a small but important act which led to the creation of a multi-faceted research and innovation project for Frail, Homebound and Bedridden People which I am co-leading.”
At its core, consumer engagement is about ensuring that medical research is serving its target community in the best way possible. Research teams who partner with consumers and community members deliver research that addresses community needs. When those with a lived experience provide their perspective and ideas, new research projects are envisaged that have a higher likelihood of translating into improved care for the community.
“One of the things the research has shown is that what researchers and clinicians believe is the most useful research to move forward, and what people with lived experience want can be quite different! But bringing together the different perspectives is essential for moving the field forward.”
“Every consumer brings their own lived experience which has inherent value, as well as a connection to their peer group and others with the same condition or the same circumstances.”
At HTSA, we offer a range of services and expertise for both researchers who wish to partner with community members, and for community members who are interested in working on research projects.
Contact us at enquiries@healthtranslationsa.org.au for more information about how you can get involved.
Photo: Penelope McMillan (Consumer Advocate)
