Below are a number of resources from Australian and international organisations, to help guide consumers and researchers as they engage throughout the research process. Some of the resources are generic and others are specific to spinal cord injury research.
Policy document: Spinal Research Institute, Australia
To establish spinal cord injury consumers as partners in research programs, the value of the skills, expertise, and knowledge they contribute must be acknowledged appropriately and supported with resources, including remuneration. This policy document, developed by the SRI, provides guidance for the remuneration of consumers. The document is shared under creative commons license CC BY-SA 4.0.
Infographic: Praxis Spinal Cord Institute, Canada
“Engaging end-users is critical in creating a successful study. Learn more about how to engage people with lived experience.”
Engaging PLEx (People with Lived Experience)
Website: Burwood Academy of Independent Living, New Zealand
Burwood Academy of Independent Living runs a program engaging people with lived experience of SCI.
“It is of vital importance to us that people with lived experience are involved in every aspect of our work – we don’t do research on people – we do research with people.”
Learn more about their PLEx Philosophy, Burwood Academy Consultation Group, and research participation.
Website: North American Spinal Cord Injury Consortium (NASCIC), North America
NASCIC has compiled a large volume of resources on their website around: SCI clinical trials participation; SCI research process for the community; Researchers engaging SCI research partners. There are a range of videos, presentations, and documents.
Website: University of British Columbia, Canada
Eight guiding principles developed by a multidisciplinary group of SCI researchers, clinicians, people with SCI, representatives from SCI community organisations, and funding agencies. The IKT Guiding Principles were developed to support SCI research that is relevant, useful, useable, and avoids tokenism.
Online Training Course: Western Australian Health Translation Network (WAHTN)
An introduction to Consumer and Community (CCI) in health and medical research. It is designed for consumers, community members, researchers, administrators, policy makers and organisations involved in health research (approx. 30 minutes to complete)
Website: Monash Partners Academic Health Science Centre. Australia
Resources and videos for consumers and researchers about consumer and community involvement in research.
Website: INVOLVE, part of the National Institute for Health Research (NIHR), United Kingdom
Resources – booklets, videos, templates, case studies – for researchers and consumers about public involvement in research.
Report: The Healthcare Improvement Studies (THIS) Institute, United Kingdom
What is known and knowledge gaps of evidence base in patient and public involvement (PPI) in research. It aims to help inform THIS Institute efforts to establish and implement an effective PPI strategy.
Guide: George and Fay Yee Centre for Healthcare Innovation, Canada
Active and meaningful patient and public engagement can occur at all phases and stages of the research process. It’s never too late to start engaging people with lived experience in your health research project. The guide helps decide which participatory approach to use in your engagement strategy.
Perspective Article: Vanesa Bochkezanian and Kim D. Anderson. Spinal Cord. 60, 187-189 (2022).
This paper discusses some of the limiting factors in the implementation of a person-centred approach in spinal cord injury research, and suggests some of the steps need to implement a person-centred model in research in people with SCI.
Research Article: Kim D. Anderson, Rachel E. Cowan, and Jane Horsewell. Journal of Neurotrauma. Mar 2016.493-499.
The purpose of this research study was to learn more about the factors that encourage or interfere with the decision to participate in clinical trials from the perspective of people living with spinal cord injury. (This article must be purchased to access.)
‘‘If a trial is designed in a manner that generates too many barriers, people either will not participate or they will enroll and then drop out – neither of which enables translation.”
Review Article (Open Access): Frank, L., Morton, S.C., Guise, J. et al. Engaging Patients and Other Non-Researchers in Health Research: Defining Research Engagement. J GEN INTERN MED 35, 307–314 (2020).
Informative article on defining research engagement.
Research Article (Open Access): Synnot Anneliese J., Cherry Catherine L., Summers Michael P., Stuckey Rwth, Milne Catherine A., Lowe Dianne B., Hill Sophie J. (2018) Consumer engagement critical to success in an Australian research project: reflections from those involved. Australian Journal of Primary Health 24, 197-203.
This article describes the people, activities and methods of consumer engagement in a complex research project and reflects on the influence this had on the research and people involved, and enablers and challenges of engagement.
“Advisory group members found contributing their expertise to research satisfying and empowering, whereas researchers gained confidence in the research direction. Meaningfully engaging consumers with a range of skills, experiences and networks can make important and unforeseen contributions to research success.”
SCITrials.org is a matching tool for clinical trials, which was created for the spinal cord injury community by the spinal cord injury community, to connect the scientific community and people living with SCI.
It was created to address some of the challenges users were experiencing on existing clinical trial sites, by providing information on trials specific to SCI, and are filtered to contain studies from legitimate universities, research centers, and hospitals. Additionally, the site allows users to save a search unique to their preferences and then receive email updates when relevant trials in their area come online.
The goal of the SCITrialsFinder website is to allow individuals with spinal cord injury (SCI), their families and health care professionals to get common language information about clinical trials as developed by experienced clinical investigators (these are called curations or curated trials). Current curated trials are those looking for participants for studies of interventions targeting improvement of neurological and related functional outcomes, currently underway in North America, Europe and Australia.