Consumers take a stand
When Sonia Mailer first started working with consumers, they were an enthusiastic but reserved lot. Manager of Melanoma Research Victoria, a multi-centre collaborative research resource, Sonia said a lot has changed since then.
“Seven years ago the consumers were shy and didn’t understand their power. They were very restrained in their feedback with the doctors,” she said.
“Now they don’t hold back. They say, ‘We disagree! We’re not having that!’
“Some of the consumers have become very knowledgeable about melanoma research. They’ve lost too many loved ones along the way and don’t want to see it happen to anyone else.”
“The consumers are an inspiration to our scientists”
She said the transformation has been wonderful to be a part of. And the best thing about this fiery crop of consumers is they don’t stand for the politics that can be an inevitable part of the landscape in medicine.
“Consumers don’t care about the politics; they just want to get the work done. And as a group with empowerment, they are even more reinforcing that they don’t stand for the politics. They’re very focused on getting everyone to work better to use the resources and cure the disease,” Sonia said.
“They bring everyone together. They bring in the community. They see no barriers between doctors, clinicians, researchers, lab assistants.”
Consumer support aids funding goals
Sonia said consumers provide vital insights for scientists that help further research goals and gain funding.
“Consumers have started to attend lab meetings as well. They’ve come from being shy to that!” she said.
“The consumers can contribute some commonsense questions. They are just looking at it from a totally different perspective and they’ve earnt a lot of respect from the scientists. And the scientists have to speak lay language so it’s good for them too.
“We have a bank of people who just want to review projects – they don’t want to attend meetings – and that’s an important part of getting funding.”
A reason to carry on
Consumers gave the researchers a reason to keep going, according to Sonia.
“The consumers are an inspiration to our scientists because as they get to know them personally it means more to be able to do something that’s going to protect them and others like them,” she said.
“Most consumers are melanoma patients, some are carers. They bring an everyday logic to a complex space. It’s an incredibly valuable investment and effort.”
She said creating a support system to assist the MRV consumer representatives had been made much easier thanks to Health Issues Centre.
“The resources of Health Issues Centre are very good. I know where they are and I know I can come to look for them on the website if I need them,” she said.
“I met a lot of good people during the course I attended. I’ve also watched class colleagues who were in more clinical roles move into more consumer engagement roles after doing the course. The networking was excellent.”
Sonia has Completed Health Issues Centre’s Graduate Certificate in Consumer and Community Engagement (10164NAT). Find out more.
