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More than a Data Point: Seeing the real lives and experiences behind the data
For more than two decades, Susan Hoskins worked in some of the world’s most challenging public health settings.
Originally from Scotland, Susan spent years working with low- and middle-income countries as an epidemiologist focused on the healthcare needs of marginalised populations. Her work focused on how better data could improve healthcare systems and outcomes for communities.
But it was caring for her mother, Ann, while she was living with MND, that ultimately changed the direction of Susan’s career.
Today, Susan is MND Australia’s Head of Epidemiological Research, bringing together her global research expertise and deeply personal lived experience to help improve the lives of people living with MND.
“I’ve spent my whole career looking at data and populations,” Susan says. “But now, every data point represents a person. It’s completely changed how I see this work.”
By 2023, Susan was living in Australia with her young family when her mum experienced a series of unexplained falls in Scotland that Ann’s clinical team believed may have been caused by a stroke.
“At the time she fell, she was still teaching French, German, and Spanish in a high school in Edinburgh,” Susan says. “She was incredibly independent and full of energy.”
“But when Mum came to stay with me in Sydney later that year, I knew something was very wrong the moment she got off the plane.”
Over the following eight weeks, Ann’s condition deteriorated rapidly. After receiving an MND diagnosis in Sydney, Susan accompanied her back to Scotland, intending to stay for only a few days. Instead, Susan stayed in Edinburgh and, together with her siblings, became Ann’s full-time carer, sleeping on a mattress on her mum’s bedroom floor for the final eight months of her life.