Hello again to all the stroke community who follow our newsletter! Since our Newsletter Editor is on maternity leave, this short edition aims to keep the stroke community posted about some of the main events and achievements in stroke research since July. Many great things have happened since our last edition. With Christmas just around the corner, we are wrapping up 2021 with some critical achievements in stroke research.
We will be in touch with our researchers early next year to follow up on their updates.
We want to thank all the fantastic people who contributed in some way to our Newsletter this year. Also, a special thank you to all the researchers who worked super hard under strict lockdowns and restrictions and kept stroke research at a high level.
We hope 2022 will be a better and easier year for us all!
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$10 million to help young stroke survivors
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A major win for Australia's young stroke survivors! Researchers at The Florey Institute in Melbourne, together with their partners, won $10 million in MRFF funding to bring faster, personalised clinical care and longer-term support for young people with stroke with Australia's first young stroke service.
Having a stroke can be profoundly disruptive to a young person’s identity, productivity, relationships, and emotional wellbeing. Many are frustrated by medical uncertainty about the cause of their stroke. Our current health system has no efficient pathway for identification, triage and referral of young stroke survivors to expert diagnostic and treatment services. Longer-term support mechanisms are also poor. Our recent survey found that 75% of stroke services across Australia reported not being able to adequately meet the needs of young survivors of stroke. Services are fragmented, limited in time or scope or simply don’t exist. Furthermore, people in regional and rural areas are 17% more likely to have a stroke, with limited access to services, resulting in poorer health outcomes. This needs to change.
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Critical gaps exist throughout the current stroke care pathway for young Australians with stroke. Long delays and challenging access to NDIS contribute to burden.
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Through co-designed research, the project aims to identify and implement the optimal components and organisation of a digitally-enabled service and follow up system to meet the unique needs of young Australians with stroke.
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The service will be built and tested with young people who have experienced a stroke, their carers and service providers. The multidisciplinary young stroke health service model will be rapidly implemented at two geographic pilot hubs (Melbourne and Adelaide), creating the ‘test bed’ for the project. Young people with stroke and family carers endorse methods of care and support that include alternative models to traditional service delivery models. This supports our focus on developing a strong virtual ‘clinic’ or service model. The digitally-enabled platform aligns with service innovations required in a post-COVID world. Plans to expand Australia-wide will be built into the model development from inception.
Congratulations to all the team: Prof Julie Bernhardt, Prof Vincent Thijs, Prof Maria Crotty, Prof Natasha Lannin, Prof Kathleen Gray, Dr Dana Wong, Assoc Prof Emma Power, Dr Karen Borschmann, Dr Kathryn S Hayward, Dr Toni Withiel, Prof Amy Brodtmann, Prof Christopher Bladin and Dr Lisa Murphy, with Curve Tomorrow - our digital health partners.
We are looking forward to seeing this project kicking off and supporting young stroke survivors.
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NOVELL Redesign moves to next phase
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NOVELL Redesign, or the Neuroscience Optimised Virtual Environments Living Lab, is redefining the way we create stroke rehabilitation services and environments. Over the past two years, the project has brought together a diverse mix of researchers, architects and designers, stroke survivors, and clinicians, to collectively reimagine what stroke rehabilitation environments might be.Now, the team are embarking on what is perhaps the most exciting phase: designing solutions to the complex array of challenges that have been identified.
In 2022, the team will continue to work with stroke survivors, clinicians, and design partners from across Australia (and the world) to propose new and innovative ways of dealing with issues. Some of the exciting challenges ahead include:
- investigating how design might (safely) insert risk into indoor environments to help with the gradual reintroduction of risk into people’s lives across the rehabilitation journey
- exploring the consequences of giving every room access to outdoor spaces to connect with nature
- integrating technology into rehabilitation processes and spaces to empower stroke survivors, and allow staff to focus on providing care and support
- and many, many more.
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If you’re interested in finding out more, please get in contact with the team via the project website.
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Making it matter: showcasing working and research partnerships with people with lived experience
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By Elizabeth Lynch,
NHMRC Early Career Research Fellow, Matthew Flinders Research Fellow
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In a conference first for the Stroke Society of Australasia Annual Scientific meeting, people from CRE Stroke Rehab and Brain Recovery and Stroke Foundation coordinated a full day pre-conference workshop on Making it matter: showcasing working and research partnerships with people with lived experience.
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Why is lived experience important in projects and research?
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The morning session showcased partnerships like the Young Stroke Project, Our Stroke Journey and Our Family’s Stroke Journey, where people with lived experience have advocated for new service initiatives and worked collaboratively with Stroke Foundation to develop new services or resources. All presentations were co-presented by people with lived experience of stroke and their working partners from Stroke Foundation or a health service.
The late morning talks and the afternoon session showcased research partnerships across diverse areas, including designing telerehabilitation interventions, aphasia research, implementation research, and using a “listening, learning and connecting” first nation’s approach. Once again all talks were co-presented by people with lived experience.
One thing I really enjoyed from coordinating and attending this session was learning about all the different projects I was not yet familiar with, and seeing how much more “normal” working with people with lived experience is becoming. While Stroke Foundation has been working collaboratively with people with lived experience of stroke over many years now, I think doing research collaboratively with people with lived experience is in the process of gaining traction. Even a few years ago, when I heard about “consumer engagement*” in stroke research, I was really only familiar with people being asked to consult on a project that was already designed or underway, or maybe reviewing research documents or hand-outs. I think as researchers, we are in a really exciting time. More and more now, researchers are actively seeking to find out what is most important to people with lived experience, what should be researched and how it should be researched. I personally feel really fortunate to be able to collaborate with some amazing individuals whose contributions based on their lived experience have strengthened the way my research is conducted.
We are hopeful that this session will be the first of what will become a regular fixture in the Scientific program of the stroke conference.
*Note: the preferred term is away from “consumer” towards “people with lived experience”
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Training modules for researchers and consumers
Results from the Diversity & Inclusion in Research workshop
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Back in February 2019, the Florey hosted an inclusion and diversity workshop where researchers and people with lived experience of stroke discussed challenges and opportunities of working together on research projects.
It was clear at this workshop that researchers and people with lived experience of stroke wanted to work together, but lots of us needed support to know how to do research that appropriately supports and values the contribution of people with lived experience, while also working within tight timelines and budgets.
Since this workshop, a small group of researchers and people with lived experience of stroke have been working together with the Stroke Foundation to develop training modules to help researchers and people with lived experience of stroke to work effectively and collaboratively on research projects.
We have created a module for people with lived experience of stroke who are new to working on research projects, and we have built an aphasia-friendly option into this module. We have also developed a training module for academic researchers who are new to working collaboratively with people with lived experience of stroke. In each module we have videos of researchers and people with lived experience sharing their research stories, along with Top Tips for each group. You can access the modules here.
We ran a 90-minute session at the recent Stroke Society of Australia Annual Scientific Meeting based on the module developed for researchers which was great fun, and generated some lively discussions despite being held on Zoom. Don’t we all look forward to the day when face-to-face meetings are safe again?
The modules have been sent out to attendees at the February 2019 workshop for feedback, as well as the Stroke Foundation Consumer Council. This feedback is being incorporated into the modules which will very soon be available on Enableme and InformMe websites.
Next steps are for people with lived experience of stroke, researchers, health professionals to log in and use the modules (please do!!). We are keen to know how useful the modules are and have approvals in place to run surveys and focus groups with people who have used the modules.
Big thanks to the team: Liz Lynch, Adrian O’Malley, Brenda Booth, Liz Gallagher, Ciara Shiggins, Dana Wong, Gillian Mason, Julie Bernhardt and Kate Hayward.
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With the EOI process to be part of ISRRA's Scientific Committee concluded, the top 4 topics for the next Roundtable have been announced in the last ISRRA Newsletter. Please check out the ISRRA Newsletter for more details here.
Four groups will be convening over the next 12-18 months to deliver important consensus recommendations as part of the Third Stroke Recovery and Rehabilitation Roundtable. The Task Force leads for these topic areas have put forward a compelling argument for how convening and consensus building around the topics will help advance not just science but also pathways for better outcomes for patients.
SRRR III topics and leads
1. A translational roadmap for the use of precision non-invasive brain stimulation in stroke rehabilitation
Jodi Edwards
Director of the Brain and Heart Nexus Research Program, University of Ottawa, Canada
Christian Gerloff
Director of the Dept. of Neurology and full Professor of Neurology, University Medical Center Hamburg Eppendorf, Germany
2. Fatigue after stroke. Towards major breakthroughs
Coralie English
Professor at University of Newcastle and Hunter Medical Research Institute, Australia
Gillian Mead
Professor of Stroke and Elderly Care Medicine, University of Edinburgh, UK
3. Standardized measurement of lower limb impairment, balance control and walking ability after stroke: The consensus-based core recommendations from the Third Stroke Recovery and Rehabilitation Roundtable Task Force (SRRR III)
Gert Kwakkel
Department of Rehabilitation Medicine, Amsterdam University Medical Centers, Amsterdam, The Netherlands
Gert Verheyden
Head of Stroke Rehabilitation Research Team at KU Leuven, Belgium
4. Taking control of the ‘control intervention’ in stroke recovery research
Kate Hayward
Senior Research Fellow, University of Melbourne and Florey Institute of Neuroscience and Mental Health, Australia
Catherine Lang
Professor of Physical Therapy and Neurology, and Occupational Therapy Associate Director, Washington University in St Louis, MO, USA
Anyone interested in stroke recovery and rehabilitation (including people with lived experience) can become a member. Click here to become an ISRRA member.
For any queries about ISRRA (e.g. membership, upcoming events, research papers published by our team) you can contact the ISRRA team at admin@strokerecoveryalliance.com.
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4 - 6 May 2022
Lyon, France
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SSA 2022
30 August - 2 September 2022
Christchurch, New Zealand
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World Stroke Congress 2022
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