Consumer Engagement Resources

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.

More resources will be added as we develop our program.

How to Engage People with Lived Experience in SCI Research

• 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.

NASCIC Resources

• 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.

Consumer and Community Participation in Health and Medical Research

• Fact Sheets: The University of Western Australia and Telethon Kids Institute, Australia
• “This series of Fact Sheets have been developed in response to requests from researchers for short, simple resources/tools to support the implementation of consumer and community participation in health research.”

How to get involved in research and Resources for researchers about public 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.

Consumer and Community Involvement

• Website: Monash Partners Academic Health Science Centre. Australia
• Resources and videos for consumers and researchers about consumer and community involvement in research.

Facilitators and Barriers to Spinal Cord Injury Clinical Trial Participation: Multi-National Perspective of People Living with Spinal Cord Injury

• 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’.

Engaging Patients and Other Non-Researchers in Health Research: Defining Research Engagement

• Review Article: 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. (This article must be purchased to access.)

Consumer engagement critical to success in an Australian research project: reflections from those involved

• 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.”

People with lived experience of SCI (PLEx) can register to any of these SCI dedicated trial finders:

SCI Trials

SCITRIALS.ORG is a new 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.

To access the continually updated information in the site, simply sign up to use the free platform at SCITRIALS.ORG – we hope to see the majority of our community adopt the site, and encourage users to spread the news about this new tool throughout their networks also.

SCITRIALS.ORG is a joint initiative of the North American Spinal Cord Injury Consortium (NASCIC) and endParalysis.org – with development provided by fuelService.org

SCI Trials Finder

The goal of the SCITrialsFinder.net 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). Currently reviewed curating trials are looking for participants for studies of interventions targeting improvement of neurological and related functional outcomes, currently underway in North America, Europe and Australia.