Kylie co-founded Little Stroke Warriors with fellow mother and advocate Dee Banks in 2016. Since the inception of Little Stroke Warriors, Kylie has been actively involved in advocating for education, awareness and funding for research into Childhood and Neonatal Stroke. A major achievement has been the development of the My Family Stroke Journey resource in collaboration with the Stroke Foundation and the awarding of the “Improving Life After Stroke” award in the 2018 Stroke Foundation awards. Outside of Kylie’s work with Little Stroke Warriors and the Stroke Foundation, she is actively involved in advocating for children with Cerebral Palsy via liaisons with the Cerebral Palsy Alliance and has provided consumer consultation services to the NSW Paediatric Rehabilitation Service working group on Telehealth. Kylie is mother to 5 year old Anika who suffered a stroke in-utero.

Presenter Of 1 Presentation

PWLE Reflections on Impact: Stroke Foundation Australia

Session Type
SSO Session
Date
28.10.2021, Thursday
Session Time
10:00 - 11:30
Room
SSO SESSIONS
Lecture Time
10:51 - 11:08

Abstract

Abstract Body

Stroke Foundation Australia involved PWLE at all levels of the organisation.

EnableMe is a stroke recovery website, bringing together information, tools and connection. Stroke Foundation engaged a diverse group of people with lived experience (PWLE) of stroke, health professionals and researchers to develop EnableMe using a codesign model. EnableMe is successful with 9,000 registered users. In 2020, 105,413 people visited EnableMe, accessing 367,400 pages of information, podcasts were played 16,109 times. 88% of PWLE reported they found EnableMe useful, and 84% would recommend it to others.

“You can relate to other people’s stories and you’re not all alone with your thoughts. People are always willing to share what they’re learnt. EnableMe is like my stroke family. It’s always there for me.” Sue Bowden, survivor of stroke

Researchers seeking Stroke Foundation support must demonstrate how they have involved PWLE in project design, team membership and thier engagment plan for the research. 100% of funded research grants involve PWLE.

Stroke Foundation “Living Clinical Guidelines” involves 35 PWLE contributing to the Content Development Group. For each topic 2-5 clinical experts are joined by 2-3 PWLE to review draft changes to recommendations with a multidisciplinary steering group (also includes two PWLE) finally approving changes. A part of the guidelines a co-design project was undertaken with members of the PWLE panel. Over a six-week period the group adapted the clinical guideline recommendation on cholesterol lowering targets which is available online. Evaluation of the living guidelines project found those involved in the development process appreciated the inclusion of consumers.

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