Consumer Engagement Resources

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.

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.

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.

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.”

SCITrials.org

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.

SCITrialsFinder.net

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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