Peter Mac patient research advocates share knowledge at global conference
2 min read 13 July 2023
Two Peter Mac patient research advocates have become the first Australian patient advocates to attend the Multinational Association of Supportive Care in Cancer (MASCC) conference to share how they can help improve cancer research.
Alan and Fiona White are patient research advocates for Peter Mac-Swinburne University of Technology and have collaborated with researchers and clinicians at both institutes for well over ten years.
“The MASCC conference held in Nara, Japan in June discussed the entire spectrum of problems experienced by patients as a result of their cancer and cancer treatment,” said Penny Scofield Professor of Digital Healthcare Innovation at Peter Mac and Professor of Health Psychology, Swinburne University of Technology.
“I’m thrilled that Alan and Fiona were invited to speak at MASCC about their experiences of working with researchers and clinicians.
“Their experience of cancer is pivotal to how we conduct research, what questions we ask and how we communicate with patients and their loved ones,” she said.
“It was a wonderful experience to make connections and meet so many remarkable people at the conference, but it was also wonderful to help researchers understand the contribution and insights we can bring to their research,” patient research advocate, Alan White, said.
“My first presentation highlighted the gender imbalance that exists with research advocates and workshopped some of the reasons why this might occur and how we can try and get more men engaged as advocates.
“I also shared how Fiona and I helped contribute to the NAVIGATE program to ensure the program met the needs of people with low-risk prostate cancer trying to understand the best course of treatment for them,” Alan said.
Alan and Fiona were also involved in the first ever role play at a MASCC conference. The role play was designed to demonstrate codesign of digital solutions to support self-management for adults with cancer using sexual rehabilitation as an example.
Peter Mac currently has 218 patient research advocates that assist with a range of activities. Their contribution is greatly appreciated.