Development of the Consumer Involvement &amp; Engagement Toolkit: a digital resource to build capacity for undertaking patient-centred clinical trials in Australia

|, Tanya Symons; Bowden, Janelle; Fallon-Ferguson, Julia; Weekes, Leanne; Ansell, James; Murphy, Rinki; Jesudason, Shilpanjali; |, Manoj Saxena; Nichol, Alistair; Straiton, Nicola

doi:10.17061/phrp32122209

Cited by 5 publications

(2 citation statements)

References 6 publications

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“… Abbreviations: ACTA, Australian Clinical Trials Alliance; CHESM, Centre for Health Exercise and Sports Medicine; KTN, Knowledge Translation Network. a References: (ACTA, 2021 ; Symons et al., 2023 ). b CHESM Consumer Involvement Levels: 1: KTN Consumer Member; Level 2: Project‐Specific Consumer Advisor; Level 3: Consumer Research Investigator: Academic‐Led Research; Level 4: Consumer Advisory Panel Member; Level 5: Consumer Research Investigator—Consumer‐Led Research.…”

Section: Resultsmentioning

confidence: 99%

“…This is particularly important as resource constraints (e.g., time and cost) are a key researcher barrier to embedding consumer involvement in research (Ayton et al., 2022 ). In Australia, several consumer and professional organisations have developed practical tools for health and medical researchers to facilitate consumer involvement in the research process (Symons et al., 2023 ; WAHTN, 2021 ) and while research groups are likely to have structures in place, only a small number have taken the initiative to publish how they have operationalised the recommendations put forth by the NHMRC (Gunatillake et al., 2020 ; MACH, 2021 ; Miller et al., 2017 ). This includes the South Australian Health and Medical Research Institute (SAHMRI) (Miller et al., 2017 ; SAHMRI, 2020 ) and the Walter and Eliza Hall Institute (MACH, 2021 ), both large‐scale health and medical research Institutes, and OPUS, a research consortium and NHMRC Centre for Research Excellence in Total Joint Replacement (Gunatillake et al., 2020 ).…”

Section: Introductionmentioning

confidence: 99%

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Development of a consumer involvement strategy for a small university‐based musculoskeletal research centre

Nelligan,

Haber,

Bennell

et al. 2023

Musculoskeletal Care

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ObjectiveTo develop a Consumer Involvement Strategy which adheres to best practice recommendations and is feasible to implement in a small musculoskeletal research centre funded solely by external grants.MethodsThe Strategy development involved five collaborative and iterative stages: (1) conceptualisation and initial consultation; (2) formation of the Consumer Involvement Strategy Action Group; (3) defining the scope and developing the strategy; (4) consultation and refinement; and (5) presentation and implementation. The final three stages were overseen by a Consumer Involvement Strategy Action Group comprising two post‐doctoral research fellows, a PhD student representative, and two consumers (people with osteoarthritis), all with experience in consumer involvement activities in research.ResultsThe final strategy aligns with best practice recommendations and includes five unique levels of consumer involvement that were devised to encompass the wide variety of consumer involvement activities across the research centre. It includes a policy document with five strategic aims, each supported by an implementation plan, and includes a suite of resources for researchers and consumers to support its application.ConclusionThe Consumer Involvement Strategy and its described development may serve as a template for other research teams facing similar resource constraints, both at a national and international level.

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Section: Resultsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Development of a consumer involvement strategy for a small university‐based musculoskeletal research centre

Nelligan,

Haber,

Bennell

et al. 2023

Musculoskeletal Care

View full text Add to dashboard Cite

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A qualitative study of barriers and facilitators to using tenecteplase to treat acute ischemic stroke

Prasad,

Jones,

Gebreyohanns

et al. 2024

Journal of Stroke and Cerebrovascular Diseases

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Partnering with consumers and practising clinicians to establish research priorities for public hospital maternity services

Cole,

Kearney,

Jenkinson

et al. 2024

Aust. Health Rev.

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Objective An innovative approach by two Queensland health services was taken to establish a shared maternity services’ research agenda by partnering with consumers and clinicians. The objective was to set the top five research priorities to ensure that the future direction of maternity research was relevant to end-user and organisational needs. Methods A modified James Lind Alliance (JLA) methodology was applied between August 2022 and February 2023 across two south-east Queensland Health Services which included five participating maternity units and involved partnership with consumers, healthcare professionals and clinician researchers. The reporting guideline for priority setting of health research (REPRISE) was followed. Results There were 192 respondents to the initial harvesting survey, generating 461 research suggestions. These were aggregated into 122 unique questions and further summarised into a list of 44 research questions. The 157 eligible interim prioritisation survey respondents short-listed 27 questions ready for ranking at a final consensus workshop. The top five question themes were: (1) maternity care experience, engagement and outcomes of priority populations; (2) increasing spontaneous vaginal birth; (3) experiences and perceptions of woman/person-centred care; (4) best practice care during the ‘fourth’ trimester; and (5) antibiotic use during labour and birth. Conclusion Applying an adapted JLA framework can successfully shape and establish a research agenda within Australian health services, through partnership with consumers and practicing clinicians. This is a transparent process that strengthens the legitimacy and credibility of research agendas, and it can form a replicable framework for other settings.

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Development of the Consumer Involvement & Engagement Toolkit: a digital resource to build capacity for undertaking patient-centred clinical trials in Australia

Cited by 5 publications

References 6 publications

Development of a consumer involvement strategy for a small university‐based musculoskeletal research centre

Development of a consumer involvement strategy for a small university‐based musculoskeletal research centre

A qualitative study of barriers and facilitators to using tenecteplase to treat acute ischemic stroke

Partnering with consumers and practising clinicians to establish research priorities for public hospital maternity services

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