Co-designing research with sepsis survivors
Amplifying The Voices Of Australian Sepsis Survivors Through The Staphylococcus Aureus Network Adaptive Platform (SNAP) Trial: Why Co-Designing Research With Consumers Is Non-Negotiable.
Conference
Format: Fifteen-Minute Discussion Tables
Topic: 9. Responsibility, Ethics, and Equity, Diversity and Inclusion (EDI) in Research and Innovation
Abstract
Aim: Consumers can play a pivotal role in clinical trials, shaping a study to cater for participants from its conception to translation of results. The voices of consumer representatives add value to all aspects of clinical trial implementation.
Background: Among bacterial pathogens, Staphylococcus aureus causes the most infection-related deaths globally, with ~1,000,000 deaths annually of which 299,000 are from bloodstream infections. With fewer than 4,500 participants ever randomised to any intervention for S. aureus bacteraemia (SAB) to date, there is little evidence to guide management. The Staphylococcus aureus Network Adaptive Platform (SNAP) trial is a global clinical trial aiming to answer multiple SAB management questions for patients across the whole of life. Including the voices and knowledge of those with lived experience of SAB means the issues most relevant to patients are prioritised. All SNAP Consumer Reference Group (CRG) members have lived experience of S. aureus infections (3 patients, 1 caregiver), and represent diverse regions across Australia, and additionally the UK.
Methodology: A consumer representative was first appointed to the SNAP Global Trial Steering Committee. Following this, the coordinating team at The Kids Research Institute Australia created an advertisement and a Terms of Reference to recruit consumers to the CRG which was circulated via existing connections, social media and networks such as Sepsis Australia.
Results: The SNAP CRG was established in 2022, with second-monthly meetings ongoing. Each CRG member is reimbursed for their time. They have actively contributed to grants as investigators and provided invaluable advice to support the expansion of the SNAP trial and relevant sub-studies. Additionally, members co-developed a Facebook page to support knowledge sharing with the wider public. The SNAP CRG members have also been instrumental in understanding issues/problems impacting patients with SAB that are not well researched (i.e. post-sepsis syndrome etc.). Recently, 6- and 12- month clinical trial endpoints were added following CRG advice that SAB recovery continues well beyond the trial primary outcome of 90 days.
Conclusion: Co-designing the SNAP Trial with survivors of SAB has led to additional endpoints and successful funding grants, as well as avenues for knowledge dissemination through social media.