0202608040057
Governance is structured as a Content Development Group comprising a Steering Committee, ten Working Groups and a Consumer Panel, supported by a Project Development Team. Three mechanisms of patient and public involvement are documented and are not equivalent to one another: ongoing structured involvement through the Lived experience Panel, whose members review guideline material aligned to their nominated interest areas and, for each topic being updated, contribute alongside clinical experts; lived-experience representation on the Content Steering Committee, the body that considers and approves updated guideline content; and formal public consultation where changes to recommendations are major. The Guidelines International Network identifies the stroke guidelines as an example of the standalone patient and public panel model.
No source reviewed for this report documents a specific recommendation having been changed as a result of lived-experience feedback, and no such claim is made here. Information on current governance, membership and process was checked in September 2026 against Stroke Foundation documentation, which is subject to change.STARDIT ID:
0202608040057State ongoing
Start 2018-09-17
Form updated 2026-09-16
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 Lived experience Panel | publishes the guidelines and supporting documentation on the InformMe website | runs public consultation | and notifies or submits changes to recommendations to the NHMRC according to whether changes are minor or major
Method: Guideline developer and maintainer
Communication: Email, telephone, public consultation, published administrative reports
The Stroke Foundation is registered in Australia, ABN 42 006 173 379. It states that it has been developing stroke guidelines since 2002. Enquiries about the guidelines and expressions of interest in joining an expert working group are directed publicly to guidelines@strokefoundation.org.au, and suggestions for new topics are invited publicly by email to the same address for consideration at the project steering committee's annual review.
Australian Living Evidence Collaboration (link)
Task: Partner organisation in the Living Stroke Guidelines | secured the funding that followed the initial pilot, allowing the Stroke Foundation to continue reviewing the literature monthly and to maintain the guidelines | identified in the GIN Public Toolkit as the organisation using the standalone patient and public panel model in its living guidelines on stroke, COVID-19, and pregnancy and postnatal care
Method: Living evidence partner organisation
The Stroke Foundation states that the Living Stroke Guidelines is a partnership between the Stroke Foundation and the Australian Living Evidence Collaboration. The name Australian Living Evidence Consortium is used in the reference list of the Stroke Foundation methodology document and in the May 2025 administrative report; this record does not assert a date for the change of name. The Stroke Foundation is the guideline developer and maintainer; this organisation is recorded here as a partner and as the source of the living evidence methodology, not as the owner of the guidelines.
Cochrane Australia
Task: Partner in the initial living guidelines pilot, which the Stroke Foundation records as commencing in July 2018 and concluding in June 2021
Method: Pilot partner organisation
The Stroke Foundation states that in 2018 to 2021 the Australian Government partnered with the Stroke Foundation and Cochrane Australia to pilot living guidelines for stroke management. This contribution is recorded as historical; no current role is stated in the sources reviewed.
MAGIC Evidence Ecosystem Foundation
Task: Provides the MAGICapp platform on which the guidelines, evidence profiles and evidence-to-decision information are published
Method: Publishing platform provider and collaborator
The Stroke Foundation states that it collaborates with the team at the MAGIC Evidence Ecosystem Foundation. Guideline recommendations are developed and published using the MAGICapp platform.
Covidence
Task: Provides the screening software used to allocate potentially relevant trials to topics and to conduct two-person full-text screening | used for data extraction and risk of bias assessment where this is not undertaken within MAGICapp
Method: Evidence screening and data extraction software provider and collaborator
The Stroke Foundation states that it collaborates with the team at Covidence.
National Health and Medical Research Council
Task: Statutory body that is notified of minor changes to guideline content and that formally considers major changes to recommendations | the Stroke Foundation states that drafts are submitted to the NHMRC for approval under section 14A of the National Health and Medical Research Council Act 1992, that the public consultation process is conducted in accordance with that section, and that the decision as to whether a change is major or minor is made in consultation with the NHMRC
Method: Statutory approval body
The 2016 NHMRC Standards for Guidelines outline the requirements to document guideline development processes, which are submitted for approval along with changes to recommendations. The NHMRC also identifies the organisations it is mandatory to consult during public consultation.
Lived experience Panel (referred to as the Consumer Panel in the Stroke Foundation methodology document and administrative reports) (35) (link)
Task: Periodically provide input into the questions the guidelines answer, which may include helping rank the most important outcomes searched for | review and comment on updated summaries of research, specifically information related to patient values and preferences | for each topic being updated, two to four individuals from the panel with experience of that topic contribute alongside clinical experts to review the updated GRADE evidence-to-decision profile and draft the changes to the recommendation, rationale and practical considerations, after which the whole panel is invited to review and comment on the draft changes | input into draft updates to background text, specifically practical considerations and consumer considerations | respond to feedback from the public consultation in cooperation with the interdisciplinary group | and co-produce lay versions of finalised recommendations through writing groups with clinicians
Method: Consumer Panel within the Content Development Group, with group lead or leads sitting on the Content Steering Committee | described by GIN as a standalone patient and public panel model with an advisory role
Recruitment: The Stroke Foundation states that the model of consumer involvement was based on feedback from consumers on the Stroke Foundation Lived Experience Council. GIN reports that an expression of interest process was used to recruit patient and public members from an existing pool of patient and public members for the stroke guidelines, and that the aim was to recruit a group with geographic and cultural diversity. Current recruitment arrangements are not stated in the sources reviewed.
Communication: Email, video calls, telephone calls, writing groups with clinicians
Declared interests: The Stroke Foundation states that all content experts, including consumers, completed a declaration of conflicts of interest form, and that potential conflicts are managed in accordance with the Stroke Foundation Conflict of Interest Policy, which is based on the relevant NHMRC documents. Members are asked to review and update their previously disclosed potential conflicts at least annually. Administrative reports published for guideline updates record, by name, the conflicts of interest declared by the consumer panel members involved in that update.
Three sources record the panel at different sizes at different dates. The current Stroke Foundation webpage lists 35 members under the heading Lived experience Panel, each identified as a stroke survivor or a carer. Appendix 1 of the Living Guidelines Methods and Processes document lists 36 people under the heading Consumer: the same 35 people, plus Kevin English. The GIN Public Toolkit chapter describes a 28-member stroke consumer panel, and states that consumer panels in this model comprise at least eight people with lived experience of the relevant condition. The two Stroke Foundation lists also record different roles for two individuals. These figures are recorded as documented and are not resolved in this report. Panel membership is subject to further change.
Content Steering Committee (link)
Task: Provides multidisciplinary oversight of guideline content | considers and approves updated guideline information and recommendations | provides final sign-off following public consultation | and reviews annually the topics and practice questions the guidelines cover
Method: Formal committee with published Terms of Reference | composed of the leads of each group within the Content Development Group, including the consumer panel
Declared interests: The Stroke Foundation states that all content experts, including consumers, completed a declaration of conflicts of interest form, and that potential conflicts are managed in line with organisational policy.
The Stroke Foundation states that the lead or leads of each group within the Content Development Group, including the consumer panel, are members of the Content Steering Committee. The current committee webpage lists two co-chairs, two deputy co-chairs, and members identified against the categories acute medical, physiotherapy, occupational therapy, nursing, speech pathology, psychology, rehabilitation medicine, dietetics, economics, other, and lived experience. Two members are identified as lived experience experts: Antonia (Toni) Arfaras and Kevin English.
Content Working Groups (link)
Task: Periodically review the literature surveillance topics and PICO questions | assist the evidence surveillance process | read and appraise included studies and update the body of evidence using GRADE methodology | update evidence summaries, supporting text and recommendations | coordinate subgroups | respond to feedback from public consultation | assist in evaluation of the model | and advise on the living guidelines model
Method: Discipline or topic based working groups within the Content Development Group, each with a lead or leads who sit on the Content Steering Committee
Declared interests: The Stroke Foundation states that all content experts, including consumers, completed a declaration of conflicts of interest form, and that potential conflicts are managed in line with organisational policy. Administrative reports published for guideline updates record, by name, the conflicts of interest declared by the working group members involved in that update.
Both the current Stroke Foundation webpage and the Living Guidelines Methods and Processes document state that there are ten content groups, separate from the consumer group. The webpage itself lists members under nine discipline headings, and the membership appendix of the methodology document assigns members to eleven working group labels. Members are listed publicly by name, discipline and institution. Potentially relevant trials and systematic reviews receive full-text review by two working group members at least every six months, or sooner where the project team determines a rapid review is required.
Project Development Team (4) (link)
Task: Manage day-to-day operations of the living guidelines programme, including the systematic review process, monthly literature searches, incorporation of new evidence into evidence summaries, guideline coordination and knowledge translation
Method: Stroke Foundation staff team
The current webpage lists Ms Melita Stirling (Interim National Manager, Evidence, Quality and Research), Ms Heidi Li (Guidelines Coordinator), Dr Chris Lassig (Knowledge Translation Coordinator) and Mr Kelvin Hill (Interim Executive Director Stroke Programs, Research and Innovation), all of the Stroke Foundation.
Kelvin Hill (link)
Task: Member of the Project Development Team | author of the Living Guidelines Methods and Processes document across all recorded versions | first author of the peer-reviewed paper on the feasibility of national living guideline methods for the Australian stroke guidelines
Method: Stroke Foundation staff | guideline methods author
The current Stroke Foundation webpage lists Kelvin Hill as Interim Executive Director Stroke Programs, Research and Innovation. The Living Guidelines Methods and Processes document records him as the author of versions 1.0 (1 December 2018), 1.1 (14 January 2019), 1.2 (1 January 2022) and 1.3 (1 June 2023).
Bruce Campbell (link)
Task: Co-Chair of the Content Steering Committee, acute medical | assesses applications to join the Content Development Group together with the other co-chair and the project team | co-author of the two peer-reviewed papers cited by the Stroke Foundation on its living guideline methods
Method: Content Steering Committee Co-Chair
Declared interests: The May 2025 administrative report records no conflicts declared, with the declaration initially provided in February 2018 and last updated in December 2018.
The current Stroke Foundation webpage lists Bruce Campbell as Co-Chair, Acute Medical, and as a neurologist and research fellow at The Royal Melbourne Hospital.
Elizabeth Lynch (link)
Task: Co-Chair of the Content Steering Committee, physiotherapy | assesses applications to join the Content Development Group together with the other co-chair and the project team
Method: Content Steering Committee Co-Chair
The current Stroke Foundation webpage lists Elizabeth Lynch as Co-Chair, Physiotherapy, and as Senior Research Fellow and Matthew Flinders Fellow, College of Nursing and Health Sciences, Flinders University. The membership appendix of the Living Guidelines Methods and Processes document records an earlier affiliation, University of SA.
Antonia (Toni) Arfaras (link)
Task: Member of the Content Steering Committee, lived experience | member of the Lived experience Panel | recorded in the May 2025 administrative report as one of the consumers involved in updating the topic of medical interventions for intracerebral haemorrhage | co-author of the 2026 peer-reviewed scoping review of lived experience engagement in Australian clinical practice guideline development
Method: Content Steering Committee member and Lived experience Panel member
Declared interests: In the May 2025 administrative report she declares an office holder interest as a member of the Stroke Foundation Lived Experience Council.
The current Stroke Foundation webpage identifies Toni Arfaras as a lived experience expert on the Content Steering Committee and separately lists her in the Lived experience Panel as a stroke survivor. She is listed as an author of the 2026 Medical Journal of Australia scoping review with an affiliation to the Australian Living Evidence Collaboration Lived Experience Advisory Group, Monash University.
Kevin English (link)
Task: Member of the Content Steering Committee, lived experience | listed as a Consumer member of the Content Development Group in the guideline methodology document | recorded in the May 2025 administrative report as one of the consumers involved in updating the topic of medical interventions for intracerebral haemorrhage
Method: Content Steering Committee member | Consumer Panel member per the guideline methodology document and the May 2025 administrative report
Declared interests: The May 2025 administrative report records no conflicts declared.
The current Stroke Foundation webpage identifies Kevin English as a lived experience expert on the Content Steering Committee. He is not listed in the Lived experience Panel on that webpage, although he is listed as a stroke survivor under the heading Consumer in Appendix 1 of the Living Guidelines Methods and Processes document, and under Consumer Panel in the May 2025 administrative report. This difference between Stroke Foundation sources is recorded as documented and is not resolved in this report.
Coralie English (link)
Task: Member of the Physiotherapy Content Working Group | previously Co-Chair of the Guidelines Content Steering Group | first author of one and co-author of the other of the two peer-reviewed papers cited by the Stroke Foundation on its living guideline methods
Method: Content Working Group member | former Content Steering Group Co-Chair
The current Stroke Foundation webpage and the membership appendix of the Living Guidelines Methods and Processes document both list Coralie English as a member of the Physiotherapy Content Working Group, at the University of Newcastle. The Stroke Foundation describes her as the previous co-chair of the Guidelines Content Steering Group. She is not listed on the current Content Steering Committee.
(link)
The Stroke Foundation records three funding phases. The initial pilot, which it states commenced in July 2018 and concluded in June 2021, was funded by the Australian Government Department of Health via the Medical Research Future Fund. Following that pilot, funding was secured by the Australian Living Evidence Consortium, allowing the Stroke Foundation to continue reviewing the literature monthly and to maintain the guidelines. The Stroke Foundation states that from 2024 it has been funding the living guidelines from public donations while it advocates for ongoing government funding.
Outputs and impacts
The Stroke Foundation states that a full version history is available within the guidelines. Labels identify 'new' or 'updated' recommendations and may also note 'Updated evidence, no change in recommendations' and 'In review'; topics that have not been updated and hence have no label can be considered current. The most recent recommendation updates listed are dated 24 April 2026. The guidelines are republished in MAGICapp whenever new evidence is added, or when practical information or other text changes.
For each topic the Stroke Foundation publishes the clinical questions, the PICO (population, intervention, comparator and outcomes), included references, and the evidence profile and summary. These feed into the rationale and the evidence to decision for each recommendation, covering benefits and harms, certainty of the evidence, preferences and values, and resources and other considerations. This provides a published audit trail from evidence to recommendation.
Documents the living evidence process, including monthly literature surveillance in PubMed, screening in Covidence, assessment of the potential impact of new evidence, updating of GRADE evidence-to-decision profiles, review by clinical content experts and people with relevant lived experience of the updated profile and draft changes to recommendations, rationale and practical considerations, public consultation of a minimum four weeks with a target of six to eight weeks, NHMRC notification or submission, and dissemination. Includes a membership appendix listing the Content Development Group. The document records its most recent revision as version 1.3, dated 1 June 2023, although the membership appendix appears more recent; process statements drawn from it are therefore recorded as current Stroke Foundation documentation rather than as necessarily describing practice at the date of this report.
Impact: Provides published, per-update documentation of who was involved, on which topic, and their declared interests, supporting external scrutiny of who contributed to each change.
Administrative reports record which members of the Content Development Group were involved in each update, which consumer panel members contributed to which specific topic, and the conflicts of interest each declared. Reports are published for updates dated between August 2019 and May 2025 inclusive.
Documents submissions received during public consultation and the responses made to them. Summaries are published for consultations dated between December 2020 and May 2025 inclusive. The Stroke Foundation states that organisations identified by the NHMRC as mandatory consultees are contacted directly, and that all individuals and organisations providing feedback are contacted afterwards and advised of the action taken in response.
Hill K, English C, Campbell BCV, McDonald S, Pattuwage L, Bates P, Lassig C, Turner T; Living Stroke Guidelines Executive Group and Content Development Group. Journal of Clinical Epidemiology. 2022 Feb;142:184-193. Cited by the Stroke Foundation as the published description of its living guideline methods. The full text of this article was not read for this report.
English C, Hill K, Cadilhac DA, Hackett ML, Lannin NA, Middleton S, Ranta A, Stocks NP, Davey J, Faux SG, Godecke E, Campbell BC. Medical Journal of Australia. 2022 Jun 6;216(10):510-514. Listed in the reference list of the Stroke Foundation methodology document. The full text of this article was not read for this report.
Describes three models for patient and public involvement in living guidelines and identifies the stroke guidelines as an example of the standalone patient and public panel model. The chapter describes a 28-member stroke consumer panel, records that panel members receive emails containing draft summaries of relevant guideline sections aligned with their nominated interest areas together with guidance on how to respond, that members email feedback to staff of the organisation who review all feedback received, and that panel members co-produce lay versions of finalised recommendations through writing groups with clinicians, meeting by video or telephone. The chapter's other two models, patient and public guideline development group members, and patient and public members matched to tasks and development groups, are illustrated using other guidelines and are not attributed by GIN to the stroke guidelines. The chapter's authorship and publication date were not established for this report.
Synnot A, MacPherson N, Benning T, Tso B, Wang C, Arfaras A, Beh BA, Cullen V, D'Lima J, Finneran T, Fry DC, King M, Meredith A, O'Malley A, Muller J, Turner T, Chakraborty SP. Medical Journal of Australia. 2026;224(2):e70132, published online 2 February 2026. A scoping review of Australian clinical practice guidelines published between 1 January 2014 and 20 March 2025, in which 150 guidelines met the inclusion criteria and 108 (72 per cent) reported some degree of lived experience engagement. The Stroke Foundation website was among the data sources searched. This source is recorded here for context and is not recorded as independent in relation to the stroke guidelines: four of its named authors, Antonia Arfaras, Brian A Beh, Jessica D'Lima and Tony Finneran, are listed as current members of the Stroke Foundation Lived experience Panel.
The Stroke Foundation publishes a Summary of Clinical Guidelines recommendations dated 2025, discipline-specific summaries dated June 2025 for dietetics, emergency department, general practitioners, nursing, occupational therapy, pharmacy, physiotherapy, psychology, social work and speech pathology, and consumer resources including a plain English summary for consumers dated 2017. No source reviewed for this report states which of these documents, if any, were co-produced with panel members.
Impact: Output influence: GIN reports that consumer panel members co-produce lay versions of finalised recommendations through writing groups with clinicians, meeting by video or telephone. Co-production is recorded specifically for this activity and not for the panel's review and feedback activities. No source reviewed for this report identifies which published documents these lay versions are.
Impact: Decision influence: the Stroke Foundation states that the lead or leads of each group within the Content Development Group, including the consumer panel, sit on the Content Steering Committee that oversees and approves content changes, and GIN records that between one and four panel members also sit on other decision-making or oversight groups. No source reviewed documents a specific recommendation having been changed as a result of lived-experience feedback, and no such claim is made here.
Once the GRADE evidence-to-decision profile has been updated, clinical content experts together with people with relevant lived experience identified from the Guidelines Consumer Panel review the updated profile and draft the changes to the recommendation, rationale and practical considerations, before consideration and approval by the Content Steering Committee and public consultation where changes are major. The Stroke Foundation states that for each topic being updated, two to four individuals from the panel with experience of that topic are included alongside clinical experts, and that the whole consumer panel is then invited to review and comment on the draft changes.
STARDIT report information
0000-0003-0316-3254
Report author. Directed the drafting of this report and used AI to generate it (Claude Opus version 5, September 2026), setting the rule that a value be recorded only where a publicly accessible source explicitly states it. The AI was used to locate the sources, extract the data from them and draft the wikitext, working under direction and to that rule. Every statement in this report is drawn from one of six sources, each of which was retrievable in full: the Stroke Foundation living guidelines webpage, the guidelines development process webpage, the living guidelines updates webpage, the Living Guidelines Methods and Processes document, the May 2025 administrative report, and the Guidelines International Network Public Toolkit chapter on models for involving patients and the public in living guidelines. Citation details for the peer-reviewed articles listed as outputs are taken from the Stroke Foundation's own reference lists and from publisher records; the full text of those articles was not read for this report, and no data is drawn from them beyond what the Stroke Foundation and the publisher state. No data has been inferred or filled in, so a blank field means the source did not state it. The author is seeking verification of the report content from the initiative, and the report has not yet been verified.