0202608040057
Patient and public involvement in these guidelines uses a standalone patient and public panel. The GIN Public Toolkit chapter on patient and public involvement in living guidelines describes this as one of three models in practical use in living guidelines. In this model the consumer panel has an advisory role, and between one and four patient and public members of the panel are also members of other decision-making or oversight groups, such as the guideline development group or the steering group, acting as a bridge between the panel and those groups. For the stroke guidelines, the consumer panel receives emails containing draft summaries of the guideline sections that align with members' nominated interest areas, for example patient values and preferences and practical considerations, together with guidance on how to respond. Panel members email their feedback to staff members of the organisation, who review all of their feedback. Consumer panel members co-produce lay versions of finalised recommendations through writing groups with clinicians, meeting by video or phone.
The Content Development Group for the guidelines comprises a Steering Committee, ten discipline-based Working Groups and a Consumer Panel, supported by a Project Development Team. Terms of reference for the Content Development Group are published, and administrative reports published for each update to NHMRC record which members of the Content Development Group were involved and any conflicts of interest they reported. New topics and questions are reviewed annually by the project steering committee, and suggestions for new topics are invited publicly by email.STARDIT ID:
0202608040057State ongoing
Start 2017-08-07
Form updated 2026-08-04
Inputs
Stroke Foundation (link)
ID: ABN 42 006 173 379
Task: Develops and maintains the living guidelines | convenes the Content Development Group, its Working Groups and the Consumer Panel | publishes the guidelines and supporting documentation on the InformMe website | runs public consultation | and submits new and updated recommendations to the NHMRC for approval
Method: Guideline developer
Communication: Email, online meetings, public consultation, published administrative reports
The Stroke Foundation is registered in Australia, ABN 42 006 173 379. Enquiries about the guidelines, and suggestions for new topics, are directed publicly to guidelines@strokefoundation.org.au.
Australian Living Evidence Collaboration (ALEC) (link)
Task: Named in the GIN Public Toolkit chapter as the guideline developer that used a standalone patient and public panel in its living guidelines on stroke, COVID-19, and pregnancy and postnatal care
Method: Living evidence collaboration
ALEC is based at the School of Public Health and Preventive Medicine, Monash University. Earlier publications also refer to this organisation as the Australian Living Evidence Consortium.
National Health and Medical Research Council (NHMRC) (link)
Task: Approves new and updated recommendations under Section 14A of the National Health and Medical Research Council Act 1992 | publishes the 2016 NHMRC Standards for Guidelines against which the development process is documented
Method: Statutory approval body
Consumer Panel (titled the Lived experience Panel on the Stroke Foundation website) (28) (link)
Task: Review draft summaries of guideline sections aligned to nominated interest areas, including patient values and preferences and practical considerations | send written feedback to Stroke Foundation staff | co-produce lay versions of finalised recommendations through writing groups with clinicians
Method: Standalone patient and public panel (consumer panel model) with an advisory role | between one and four panel members also sit on other decision-making or oversight groups
Recruitment: Expression of interest process, recruiting patient and public members from an existing pool of patient and public members
Communication: Email, video calls, phone calls, writing groups with clinicians
Compensation: other(reimbursement of expenses, a gift, and a certificate of appreciation)
The GIN Public Toolkit chapter published in 2025 describes a 28-member consumer panel for the stroke guidelines, and this is the figure recorded in the number field. The Stroke Foundation website names the members of this panel individually under the heading Lived experience Panel, describing each as a stroke survivor or a carer; the list published at the time this report was compiled named 35 people. Both figures are recorded here so that the discrepancy can be resolved by the guideline developer rather than silently reconciled.
Content Steering Committee (link)
Task: Provides oversight of guideline content, chairs the Content Development Group, and annually reviews the topics the guidelines cover and the practice questions they answer
Method: Formal committee with published Terms of Reference
Members are listed publicly by name, discipline and institution. Two members are identified on the Stroke Foundation website as lived experience experts, consistent with the consumer panel model in which between one and four patient and public members also sit on decision-making or oversight groups.
Content Working Groups (ten discipline-based groups) (link)
Task: Review evidence and develop and update recommendations within their discipline areas
Method: Discipline-based working groups within the Content Development Group
Working groups cover acute medical, dietetics, nursing, occupational therapy, physiotherapy, psychology, rehabilitation medicine, speech pathology and other areas. Members are listed publicly by name, discipline and institution. Membership of the expert working groups is open to volunteers by application to the Stroke Foundation.
Project Development Team (4) (link)
Task: Coordinate and manage the living guidelines programme, including guideline coordination and knowledge translation
Method: Stroke Foundation staff team
Listed publicly as Melita Stirling (Interim National Manager, Evidence, Quality and Research), Heidi Li (Guidelines Coordinator), Chris Lassig (Knowledge Translation Coordinator) and Kelvin Hill (Interim Executive Director Stroke Programs, Research and Innovation).
Kelvin Hill (link)
Task: Member of the Project Development Team | first author of the peer-reviewed paper on the feasibility of national living guideline methods for the Australian stroke guidelines, and a co-author of the peer-reviewed paper on consumer engagement in living guidelines
Method: Stroke Foundation staff | guideline methods author
Listed as Interim Executive Director Stroke Programs, Research and Innovation at the Stroke Foundation.
Bruce Campbell (link)
Task: Co-Chair of the Content Steering Committee, acute medical
Method: Content Steering Committee Co-Chair
Listed as neurologist and research fellow at The Royal Melbourne Hospital.
Elizabeth Lynch (link)
Task: Co-Chair of the Content Steering Committee, physiotherapy
Method: Content Steering Committee Co-Chair
Listed as Senior Research Fellow and Matthew Flinders Fellow, College of Nursing and Health Sciences, Flinders University.
Antonia (Toni) Arfaras (link)
Task: Member of the Content Steering Committee, lived experience | also listed as a member of the Lived experience Panel
Method: Content Steering Committee member and consumer panel member
Listed on the Stroke Foundation website as a lived experience expert and as a stroke survivor.
Kevin English (link)
Task: Member of the Content Steering Committee, lived experience | consumer co-author of the peer-reviewed paper on consumer engagement in living guidelines
Method: Content Steering Committee member | consumer co-author
Listed on the Stroke Foundation website as a lived experience expert. Listed in the peer-reviewed paper as a consumer co-author based in Australia or the United Kingdom.
Coralie English (link)
Task: Previous Co-Chair of the Guidelines Content Steering Group | member of the Physiotherapy Content Working Group | first author of the peer-reviewed article on living clinical guidelines for stroke and a co-author of the paper on the feasibility of national living guideline methods | presents a public video explaining the guidelines for stroke rehabilitation
Method: Content Working Group member | former Content Steering Group Co-Chair
Listed as Professor, Physiotherapy, University of Newcastle.
Anneliese Synnot (link)
Task: Lead author of the peer-reviewed paper describing consumer engagement across five living guidelines including the Australian stroke guidelines, and joint first author and corresponding author of the GIN Public Toolkit chapter describing the three models of patient and public involvement in living guidelines
Method: Author of the peer-reviewed description and evaluation of the involvement model
Listed with affiliations at the School of Public Health and Preventive Medicine, Monash University, and the Centre for Health Communication and Participation, La Trobe University.
Authors of the GIN Public Toolkit chapter 'Patient and public involvement in living guidelines' (13) (link)
Task: Wrote the published chapter describing the three models of patient and public involvement in living guidelines, including the standalone patient and public panel model used for these guidelines
Method: Collaborative authorship involving staff and patient and public members of guideline development groups from the Australian Living Evidence Collaboration and the National Institute for Health and Care Excellence
Listed as Anneliese Synnot (joint first author), Sarah Scott (joint first author), Vanessa Cullen, Ahlia Griffiths, Marie Harrisingh, Michelle King, Emma McFarlane, Melanie McKenzie, Alexander Meredith, Stella O'Brien, Carole Pitkeathley, Katy Tan and David Tunnicliffe. The chapter acknowledges peer reviewers including members of the GIN Public Working Group, and Dr Tanya Millard for information used in one case study.
(link)
The stroke guideline was funded by the Australian Government through the Medical Research Future Fund during a three-year establishment project from 2018 to 2021. The guidelines are currently supported internally by the Stroke Foundation.
Outputs and impacts
Recommendations carry labels indicating new, updated, updated evidence with no change in recommendations, or in review. A version history is available for each recommendation and chapter.
Administrative reports record which members of the Content Development Group were involved in each update and any conflicts of interest they reported. Public consultation submission summaries record submissions received and the responses to them.
Impact: Describes guideline developers' and patient and public members' reflections on their experiences of being involved in five living guidelines, including the Australian stroke guidelines, and reports that involving more than ten patient and public members in a consumer panel allowed a wider range of perspectives, writing groups with equal numbers of patient and public members and clinicians, greater peer support, upskilling of less experienced members, and flexibility to cover scheduling difficulties
Describes three models for patient and public involvement in living guidelines and uses the stroke guidelines as one of the worked examples of the standalone patient and public panel model.
Impact: Consumer panel members co-produce lay versions of finalised recommendations through writing groups with clinicians