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New digital resource hub for people with severe asthma

27 November 2019
People with severe asthma tell their stories
University of Sydney researchers have partnered with the University of Newcastle and Healthtalk Australia to produce evidence-based digital resources about severe asthma.
Person using asthma puffer

The new website aims to inform and support people living with severe asthma and educate health practitioners treating patients with the condition.  

Severe asthma affects 3-10% of Australians living with asthma. Whilst the symptoms of mild to moderate asthma can be well controlled with appropriate medications, severe asthma is very difficult to control, even when high doses of medications are taken.

The Centre Of Excellence in Severe Asthma launched the website in Newcastle on November 27th. The launch was attended by local members of parliament, project investigators, Michele Goldman CEO of Asthma Australia, and project participants.

Professor Peter Gibson, Respiratory Specialist and Lead Investigator of the CRE in Severe Asthma, said severe asthma exerts a huge burden on individuals, their families and the healthcare system.

Associate Professor Lorraine Smith from the University of Sydney is a member of the CRE in Severe Asthma research team and Co-Director of Healthtalk Australia and was a project lead on the new website.

She says, “our HTA team have now produced 9 resources for Australians on long-term conditions. They are a product of rigorously and systematically researched stories of Australians from all walks of life living with and managing health conditions. These resources are publicly available and are used by not only by people with lived experience, but also expert clinicians and social researchers in health.”

One of the study participants Monique explains why the severe asthma website will be so useful:

Honestly I don't know anyone with asthma like mine, there aren't any resources out there for me to feel like I'm not alone. We need a place that let's us know, there are others like us, we can get support. Also for the people around me to learn more about severe asthma.

The Healthtalk Australia resource on people’s experiences of severe asthma presents the stories of 35 people aged between 19 -74 from diverse socio-cultural backrounds, living in urban and rural/remote regions across Australia.

Participants share their stories about diagnosis, symptoms, long-term health effects, treatments, experiences with health services and health practitioners.

Professor Smith said the online resources provide information and support for people with severe asthma by providing a range of people’s experiences and links to evidence based clinical resources.

“We hope that this platform can support not only people with severe asthma, and their families and friends, but also equip health practitioners and the wider community to better support people living with this debilitating condition.”

Associate Professor Lorraine Smith

Associate Director (Education - Enterprise and Engagement)

Associate Professor Lorraine Smith is a research psychologist with an interest in patient self-management of chronic conditions. Her work in this field centres on the development and testing of models of patient-centred chronic condition self-management and goal-setting.

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