Consumer Engagement Resources

Ask the SRI

A series of ten videos and fact sheets about spinal cord injury research for consumers

Ask the SRI is a series of ten videos and corresponding fact sheets that aim to answer your questions about research. These resources were developed by the SRI to support consumers who would like to become involved in research. In some instances, content has been adapted from material created by Cancer Council NSW. The Spinal Research Institute acknowledges the generosity of Cancer Council NSW in sharing this content. View the series introduction video. You can also download all ten fact sheets.

1. What is research?

2. What is the research cycle?

3. Why is research important?

4. Who are consumers?

5. Why is consumer participation important?

6. How can consumers participate in research?

7. What are clinical trials?

8. What is qualitative research?

9. What is quantitative research?

10. What is the biopsychosocial model?

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.

SRI Policy for Consumer Remuneration

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.

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.

NASCIC SCI Research Advocacy Course

Website: North American Spinal Cord Injury Consortium (NASCIC), North America

This course is designed to increase knowledge of the research process so that individuals with SCI and caregivers feel prepared to serve as research advisors and that SCI researchers and healthcare providers are better able to effectively partner with the SCI community. This course is intended for everyone across the SCI community to expand their knowledge on spinal cord injury and research advocacy.

The Spinal Research Institute has developed supplementary content for those undertaking the course in Australia.

Integrated Knowledge Translation (IKT) Guiding Principles

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.

Consumer and Community Involvement in Health Research

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)

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.

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.

Patient and Public Involvement and Engagement 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.

Methods of Patient and Public Engagement

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.

Involving people with lived experience of spinal cord injury in research: a policy for consumer remuneration

Perspective Article: Kristine L. Hendry and Antonio Vecchio. Spinal Cord 61, 285-287 (2023).

This paper sets out the process undertaken by the SRI to develop a Policy for Consumer Remuneration. It addresses the rationale for creating a policy, the resources used and shares the model that defines the levels of consumer engagement and associated remuneration. The SRI Policy for Consumer Remuneration sets a standard for the SCI research field, which can serve as a model for Australia and as a template for other countries.

Comprehensive and person-centred approach in research: what is missing?

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.

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 (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.

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.” 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.

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