 End of the year summary
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It’s been a great year for our Alliance with a lot of activity, alignment, planning and action! That is exactly what we hoped to see to achieve our vision:
A world where global collaboration brings major breakthroughs for people living with stroke
A big THANK YOU to the many people who are working to see our strategy realized.
This year we established our Executive, held the EOI and evaluation process for our next series of Roundtables and announced 4 outstanding Roundtable teams (see our last newsletter for details) who are already well underway with planning for an exciting 2022!
We are also working (but a little behind) on establishing our Scientific Committee. Thank you for your patience as we work through our processes. I look forward to announcing our new Committee early in 2022.
Throughout 2020 and 2021, we have continued with our Working Groups, and these are the focus of the current newsletter. Some are progressing very well, others still need to find champions to move them forward.
You may ask yourself “What is an ISRRA Working Group?” Well, Working Groups are non-permanent (so called ‘task & finish’), action-focused teams of members who share a common and clear goal to advance the practice or science of stroke recovery or rehabilitation and meet regularly to work through clear steps to bring an idea, approach or action to fruition.
During our strategic planning meeting we identified some important early working groups:
- Developing standards and implementation plan for Clinical Centres of Excellence
- Developing a multi-country, stroke recovery economics ‘song sheet’ we can share to talk about the value of recovery and rehabilitation research and practice
- Industry engagement
- Flagship research project standards and implementation plan
Some updates from these groups are outlined below.
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Working groups update
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Centres of Clinical Excellence (CoE)
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1. Deliver outstanding rehabilitation to ensure optimal outcome
2. Have a strongly developed research culture
3. Ensure interprofessional working and person-centred rehabilitation
4. Exchange new knowledge and promote mentorship to advance best practice
5. Have a shared ethical and value-based leadership
6. Provide continuous high-quality education
7. Advocate and promote equitable access and optimal delivery of stroke rehabilitation services and funding for innovative research
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We have presented these criteria at national and international conferences in 2021.
The next steps are to operationalize these criteria, to allow assessment of performance of clinical centres and to allow identification of areas for improvement within clinical centres. The process needs to be easy to apply, be universally applicable and transparent.
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Rachel Stockley (UK) and Liz Lynch (Australia) are coordinating this next piece of work, with mentoring and support from Marion Walker. We anticipate the process for assessing performance of clinical centres against the 7 criteria will be finalized in November 2022, ready for pilot testing in 2023.
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Developing our economic 'song sheet'
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This Working Group has made some progress towards designing the research protocol for this important piece of work, but our health economic team have been pulled in a number of new work directions. We need to identify funding to support a dedicated person to assist with this project. Watch this space, it’s not gone, just on hold – and of course if you know people who might be interested in helping then get in touch!
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Our Working Group has met a number of times over the latter half of 2021. The working group is small but includes members from academia (preclinical and clinical researchers) and industry. Discussions to date have explored a preliminary needs assessment for one or more future potential larger gathering(s) with the primary objective of enhancing international cooperation in stroke recovery research between industry and academia. Several potential topics for the future larger gathering(s) have been identified:
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Improved trial design, barriers to efficient conduct of multi-site clinical trials, differing challenges faced by pharma, device and software manufacturers and the importance of involving individuals with lived experience to help guide research and development. Into the new year, the working group will begin to identify potential participants and plan for one or more industry summit meetings to advance our primary objective
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Flagship research projects
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The working group for the Flagship project was initiated to create a collective understanding of what is important to consider for developing or supporting a major project idea through ISSRA.
The aim of the working group is to create a vision for two major international stroke rehabilitation and recovery trials: one for low-to-middle income countries (LMIC), one for high-income countries (HIC).
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Each project will deliver a major impact, bringing ISSRA members, consumers, and clinicians together to drive globally significant change in stroke recovery and outcomes. The team consists of Coralie English (Aus), John Solomon (India), John Krakauer (USA), Rita Melifonwu (Nigeria), Jane Macguire (Aus), Victor Gonzalez (Chile). Postdoctoral support: Dawn Simpson (Aus), Amreen Mahmood (India).
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The team has identified the important individual attributes of the flagship project for HIC and LMIC through a survey and consensus among experts. These attributes were presented and discussed with other researchers in HIC and LMIC during the ISSRA launch in October 2020.
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The team went ahead and examined the process by which these flagship projects can be identified. Presently a template for the EOI of flagship project has been created. The working group will start identifying steps to initiate flagship projects in the upcoming year.
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Introducing two new working groups
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In addition, we are excited to announce two new Working Groups - Frailty and Physical Activity who formed to submit a Roundtable proposal, but whose planned work was too big to fit a short-term Roundtable task force. The Leads of these groups share some of their ambitions below.
anchor to new s
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Frailty represents one of the major contemporary public health concerns. International healthcare systems are adapting to accommodate the health needs of older adults living with frailty. However, stroke and rehabilitation have been conspicuously absent from recent guidance. The same situation is seen for research, with an exponential increase in frailty research in the last decade but still relatively little work with a stroke or rehabilitation focus.
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Thankfully the landscape is changing and important research on frailty and stroke is being published, but to date there has been no international stroke-frailty collaborative platform. We are excited to from a working group under the auspices of ISRRA and led by Terry Quinn (Glasgow, UK) and Richard Lindley (Sydney, Australia). We have assembled an international collective of experts and enthusiasts with a background in stroke, frailty or both. This international, multidisciplinary team will work together to tackle some of the major roadblocks to advancing the stroke-frailty clinical and research agenda.
In the first instance we will turn our attention to the assessment of frailty and pre-stroke function. We will begin with assessment, as the first step to understanding and managing frailty is to look for it and find it.
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Physical activity after stroke is underpinned by a growing body of evidence that demonstrates it can improve a wide range of important physical and psychosocial outcomes related to recovery, as well as reduce the risk of subsequent stroke. Implementation of physical activity in practice is patchy however - especially in low- and middle income countries, where there are no guidelines for physical activity after stroke. Poor implementation means that recovery after stroke is likely to be sub-optimal – particularly amongst those living in deprived circumstances.
This new ISRRA working group, with committed topic experts from around the world, aims to break through this implementation impasse. Our first aim is to co-create the first global, stroke-specific guideline on physical activity after stroke, accompanied by recommendations for implementation and strategies for communication and engagement. Thereafter, we will endeavour to develop guideline-based accessible toolkits to implement physical activity across the stroke care pathway, achieve consensus on service provider competencies, and design educational resources for service providers and service users to enhance implementation. We look forward to working under the auspices of ISRRA as we set to work!
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A final word on ISRRA working groups...
We see Working Groups as an important mechanism to build collaborations, research, other outputs and impact for ISRRA. In 2022 we’ll tell you more about the mechanism we’ll use to call for, review and endorse new applications for Working Groups from members.
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If you are interested in contributing to the work of any of these groups, you can contact ISRRA central to express interest. Working Group Leads are responsible for deciding the right time to include additional members. People with lived experience of stroke will be welcomed in working groups.
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Collaborative projects from our members
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Here we profile collaborative projects seeking further assistance or collaboration.
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The Global Consortium for Stroke Rehabilitation in Low and Low-Middle Income Countries (GCSR) & its Vision
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Stroke has consistently been one of the leading causes of death and dependency across the globe and especially in Low-and-Middle-Income-Countries (LMICs). The evidence base for stroke rehabilitation has grown in the past decade, however its application in clinical practice is sub-optimal in LMICs. Evidence-based Clinical Practice Guidelines (CPGs) aid in promoting best possible clinical practice. However, the lack of specificity, clinical applicability, regional adaptability and knowledge translation programs have caused poor uptake of CPGs into clinical practice in LMICs.
We are a group of like-minded rehabilitation professionals who have joined hands to make ‘Clinical Practice Guidelines’ for stroke rehabilitation more accessible, socially and culturally-relevant and improve awareness among rehabilitation professionals for use of the same. Towards this cause we have developed a consortium called the ‘Global Consortium for Stroke Rehabilitation in Low and Low-Middle Income Countries (GCSR)’ which currently has 7 members from India and Rwanda with an internationally renowned advisory committee from across the world (Dr Julie Bernhardt-Australia, Dr. Jeyaraj D Pandian-India, Dr. Peter Langhorne-Scotland & Dr. Patrice Lindsay-Canada).
The GCSR core committee
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Dorcas BC Ghandi
India
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John M Solomon
India
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Gerard Urimubenshi
Rwanda
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Ivy A Sebastian
India
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Amreen Mahmood
India
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Sureshkumar Kamalakannan
India
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Aditi Hombali
UK
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Through a multiphase project we intend to (1) collate and evaluate existing CPGs for stroke rehabilitation from LMICs, (2) understand user (rehabilitation professionals and stroke clients) knowledge and use of CPGs in practice, (3) identify enablers to implementation of evidence-based rehabilitation to create a pathway to better patient care in LMICs, (4) Create a central online repository (website) accessible to rehabilitation professionals across the world, containing CPGs from LMICs for stroke rehabilitation identified via the systematic review, (5) Develop LMIC-specific CPGs for stroke rehabilitation based on the findings of the previous phases, (6) Empower rehabilitation professionals to implement evidence-based CPGs for stroke rehabilitation on a regular basis.
We believe that such tasks will create a momentum towards acknowledging the need for rehabilitation after stroke and professionals seeking and implementing evidence-based care. It has been proven that comprehensive CPGs in stroke rehabilitation provide guidance on up-to-date evidence and clinical practice recommendations. A well-informed rehabilitation protocol is one of the pillars of reducing stroke burden and disability adjusted life years, Use of such quality improving strategies will improve not only the standards of practice but also patient outcomes, satisfaction and in some cases the cost of care.
As our first step, the GCSR is currently trying to avail grants for initiating these tasks in addition to looking for like-minded rehabilitation professionals who wish to be part of the consortium and contribute in any other way. We hope to bring a measurable improvement in stroke care delivery in LMICs through our projects.
We are keen to expand this network as well as include professionals from various rehabilitation specialities and other countries. If you are interested in joining this group please contact them by clicking the button above.
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In this important building phase for ISRRA we need to get the message out far and wide. Thank you to all those members who gave a plug for our work throughout 2021!
As the world continues to meet virtually, we continue to take the opportunity to engage in a range of conferences to spread the word about ISRRA in 2022.
So far, we’ve secured a talk or a session at:
March 30th – April 1st, 2022
8th International Conference on Neurology and Epidemiology
May 4th 2022 17.00 – 18.30 CEST
European Stroke Organisation Conference – Scientific Session 11 on ISSRA
Members have also submitted a workshop to showcase Roundtable progress to WFNR, and to the World Stroke Organisation Congress.
Note that the World Stroke Congress is still accepting workshop proposals until January 4, 2022. See below to submit a session.
If you hear of an opportunity and would like to speak, please contact ISRRA Central to get access to slides and support that can help you present our Alliance to your network.
| 14TH WORLD |
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| STROKE CONGRESS |
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| 2022 |
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| OCTOBER 26-29 | SINGAPORE |
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| A SCIENTIFIC PROGRAM BUILT BY YOU
If you missed the December 13th, 2021 deadline, WSO has extended the program proposal submission date until 4 January 2022.
Please send your recommendations and help make a great impact on stroke science by being involved in crafting the WSC 2022 program.
Diversity of speakers and the inclusion of young talents are encouraged.
Extended Proposal Submission Deadline: 4 January 2022
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Finally, after what has been a challenging year for many, we want to take this opportunity to wish you and your loved ones rest and recuperation over this festive season.
We look forward to working with you in 2022!
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