Researcher Highlights
Placing lived experience at the centre of stroke research

Professor Coralie English is working with multidisciplinary, global collaborations to improve the lives of people living with stroke.

Coralie centres people with lived experience of stroke in every stage of her research and practice. Essential to her practice is gathering a collaborative team: whether it’s locally in the lab, over coffee mornings, research Roundtables or through international collaborations. Coralie knows that the best research is a group effort well-led.

“What really excites me about the work that I do is having the opportunity to work on projects and ideas that will help improve the lives of people living with stroke,” Coralie says. “I love that I have the opportunity to work with the real stroke experts - people living with stroke.”

Working as a clinician in a hospital inspired Coralie to get into research. “Back then I’d be treating people and thought ‘This can’t be all that we do. There must be better ways of helping people…’”

“The work I’m doing now around physical activity very much draws on my physiotherapy-specific skills,” Coralie says. “I love working in multi-disciplinary team and I quite like it when people at conferences ask: ‘What were you trained in?’”

“There’s actually not a forma; speciality for stroke in medicine: you can be a neurologist, or a geriatrician or a rehabilitation physician working in stroke,” Coralie explains. “So there’s a great term that doctors often use where they talk about being a ‘Strokeologist’, which isn’t a real term but I quite like thinking of myself as a Strokeologist and an Enthusiologist,” Coralie adds.

Living guidelines for better outcomes

As Co-Chair of the Stroke Clinical Guidelines, Coralie oversaw the development of the world’s first Living Clinical Guideline for Stroke. After the most recent static update of the Guidelines that happened between 2015-2017, the Stroke Foundation was awarded MRFF funding to test an Australian-first model of Living Clinical Guidelines, and Coralie continued in her Co-Chair role to oversee this work. “We always knew that the problem with static guidelines was that they become out-of-date so quickly.”

“They’ve now been rebranded as the Australian and New Zealand Guidelines and we’ve already demonstrated that we’ve made real savings to lives and reduced costs in stroke care,” Coralie adds. “These are the only living stroke guideline in the world, and was the first Australian living guideline for any condition, and they’re now being accessed by people world-wide”.

“As well as being regularly updated, they’re linked to the Stroke Foundation’s clinical audit projects, meaning we can constantly audited how well we are doing in getting best evidence treatments and care to people with stroke.”

A recent consumer-led initiative honed-in on which of the recommendations should be a priority for research and implementation. “We asked the consumers ‘which guidelines should we really be focussing on?’”

Active listening gets results

It’s through hearing from people living with stroke that Coralie’s research gathers momentum. One in four people worldwide will have a stroke in their lifetime, with almost half of those likely to have further strokes. Coralie’s research hinges on the fact that recurrent strokes are largely preventable, with physical activity and diet being the key modifiable risk factors.

This is why Coralie, a trained physiotherapist, works closely with dietitians, clinicians and (again) most importantly – people living with stroke. Which is where the latest part of her research comes in. Up to 80% of people who’ve had a stroke suffer debilitating fatigue which not only significantly impacts their quality of life – it also impedes their ability to exercise and even eat well.

Which is why it’s consistently rated a top research priority for people living with stroke.

“The thing about working with stroke survivors is that it’s changed what I’m working on with my research as well,” Coralie adds. “Fatigue is a major issue for so many people but it’s something that nobody’s really known how to address. We’re now stepping up into that space and working on how to tackle it.”

Coralie is also developing the i-REBOUND website, partnering with the Stroke Foundation and people living with stroke to showcase resources to assist people with stroke to move more and eat well.

A multi-faceted approach

“There’s huge variations in how people are impacted by stroke, because no two brains are the same and everyone’s brain is affected by stroke differently,” Coralie says. “But I think there’s complexities in every disease group and often the hidden disabilities are more difficult to deal with as well.”

“For people living with stroke, language and communication difficulties can be overwhelming. However, thanks to the work of the Stroke Foundation and the Centre for Research Excellence in Aphasia – there’s been a massive change in how we can work on this,” Coralie says. “It’s now no longer acceptable to exclude people with aphasia from research because you’re unsure if they can give informed consent.”

Rachael Peak is a member of Coralie’s team who’s a stroke survivor living with aphasia. “Ray brings so much to our team,” says Coralie. “As both a team member and part of the advisory group. Having her in the team shows us every day that people with stroke are not just their stories and can make a valuable contribution to research. She also reminds us of our need to concentrate on our communication and slow down, pause and give people time to respond.”

It was another team member, researcher and consumer advocate Gillian Mason, who got Coralie thinking about working first-hand with stroke survivors. “Working with our “Stroke Experts” (which I what I call survivors) has really improved what we’re doing. They’ve informed us on how to best present information around using diet and exercise to keep people healthy – and what we can do to empower people to live a better life.”

Leadership through sponsorship

Balancing a range of leadership roles at the University, HMRI and the local health district, Coralie embraces the opportunity to support others along the way. “Being known as a leader of a team that’s collegiate and supportive means that people want to join it, so that you have that critical mass of people that support each other,” Coralie says.

“One of the lovely things about working as Deputy Head of School for Research in my school is seeing what can be done with just a little bit of nudging around equity and diversity,” Coralie says.

“When you’ve got true champions in leadership positions it doesn’t take much to suggest trying to do something in a different way and see it make a big difference.”

With team member based in Newcastle, Sydney and Melbourne, along with international collaborators – Coralie has big plans. For big results. “We need to bring teams together not just locally, but nationally and internationally to address these issues at a national and international level.”