Oral Presentation Smart Strokes Annual Scientific Meeting 2024

Collaborative Lived Experience Co-Design to STOPstroke: A Synergy Grant (106885)

Brenda Booth 1 , Eleanor Horton 1 , Christine Farmer 2 , Judy Katzenellenbogen 3 , Mark Nelson 2 , Timothy Kleinig 4 , Valery Feigin 5 , Dominique Cadilhac 6 , Lee Nedkoff 3 , Joosup Kim 6 , Monique Kilkenny 6 , Seana Gall 2
  1. STOPstroke, Hobart, Tasmania
  2. Menzies Institute for Medical Research, Hobart, TAS, Australia
  3. University of Western Australia, Perth, Western Australia, Australia
  4. Central Adelaide Local Health Network, Adelaide, South Australia
  5. NISAN, Auckland University of Technology, Auckland, New Zealand
  6. Faculty of Medicine, Dentistry and Health Sciences, Monash University, Melbourne, Victoria, Australia

Introduction: STOPstroke is 5-year NHMRC-funded Synergy Grant that aims to improve the primary and secondary prevention of stroke. Using a case study approach, we describe our involvement of people with lived experience of stroke in delivering our research program.

Methods: In early 2019, two lived experience experts reviewed the grant proposal with one being included as an associate investigator. In early 2020, we established an independent advisory committee led by a person with lived experience of stroke. In mid-2020, we developed a ‘consumer engagement plan’ in collaboration between the investigators; the lived experience expert; and the advisory committee that guided processes and procedures including remuneration. Reflections on embedding lived experience experts to the research program are described below.

Results: STOPstroke is funded from 2020 to 2024 with lived experience involvement in all investigator and advisory group meetings. The ‘consumer engagement plan’ recommended a priority setting project that had consumer-led conversations to identify stroke prevention research priorities, which was completed in 2021. It identified the top 22 research priorities across Australia and New Zealand from over 350 people. All new studies evolving from the program have integrated lived experience experts: Love Your Brain used 8 co-design workshops with lived experience participants to create a digital stroke prevention intervention; an RCT of a new model of care for blood pressure management post-stroke included two lived experience experts in protocol and funding application development; and a secondary prevention roundtable included several lived experience participants. We will present the levels and outcomes of lived experience involvement at the conference.

Conclusion: STOPstroke has greatly benefited from lived experience experts collaborating to design, implement and disseminate the research program.

Relevance to clinical practice or patient experience: Stroke research programs should embed engagement with lived experience experts using best practice including governance processes and remuneration.