Supporting ethical inclusion of people with acquired disability in research: consumer informed approaches

About the Project

This research project aimed to establish best-practice resources in engaging and completing research with people with an acquired disability and vulunerable populations for better research outcomes.

The project explored literature, research engagement experiences of people with an acquired disability, consumer experience, and co-designed and co-produced a community resource for Australians that live with disability.

Titled, 'Deciding whether to participate in research', this resource aims to support potential research participants who live with a disability to:     

• Make an informed decision about whether to take part in a research project.
• Be empowered throughout the research process.
• Ask questions and speak up about individual needs to ensure researchers respect the rights of participants.
• Make decisions that ensure researchers treat individuals as participants, rather than just as subjects.

Being involved in research is voluntary. This means that you must freely decide for yourself whether you want to take part. Every person who is asked to be involved in research needs to weigh the cost of being involved against the benefit gained. This resource will help potential research participants to do this. We encourage all researchers to utilise this resource, sending it out to potential research participants, along with the project participant information sheet, referring the potential participants to read the resource, before they decide whether to take part in research. Additionally, this is also a helpful tool for researchers to use when designing the project participant information sheet and supporting inclusion of vulnerable people in research.

The Research Journey:

This research project was important in meeting project aims, creating a helpful informative resource and supporting the basic human rights of people with acquired disability to optimally engage in research. As well as finding ways to include a population that is more often than not marginalised and vulnerable in research by developing research engagement strategies that go beyond tokenistic approaches. Furthermore, the research focused on finding practical strategies for ensuring that the voice of people with acquired disability can be robustly included in best practice guidelines. Consumer engaged research is of national priority for the NHMRC and ARC as well as with State and Local funding bodies. There are real opportunities to inform policy through the findings and outcomes of this project. Through greater evidence about ethically sound ways to engage consumers stronger policy positions and practice methods can be developled. Engaging consumers in research results in better research that is more applicable for the consumer. 

This project work will also benefit researchers with better resources and strategies to include people with acquired disability in all aspects of research, as well as the human rights of people with acquired disability being upheld by ensuring their voice is more consistently included in research planning and conduct. 

A consumer reference group (CRG) was recruited and engaged on the study protocol, co-designed survey, data collection and in co-producing the resource for the inclusion of volunerable people people in research.

The Resource:

We are pleased to release a community resource, produced by the research project, in partnership with citizen researchers and people with lived experience. Click here to view the resource to assist people with disability in deciding whether to participate in research.

A big thank you and acknowledgment to those who worked on the Consumer Ethics Seed Project and co-designed this resource:
Gary Allen (Griffith University, AHRECS, Enabled.vip); Carolyn Ehrlich (Griffith University); Delena Amsters (Queensland Health and Griffith University); Maddy Slattery (Griffith University); Mandy Nielsen (Queensland Health); and Michael Norwood (Griffith University). Many thanks to the community/consumer reference group (CRG) of Australians who live with a disability: Carolyn J. Becker, Janelle Colquhoun, Jillian Kingsford Smith, Elizabeth Miller, Leanne Whitehouse, and Dr Barbara Wolfenden. The research team appreciated the in-kind support from Griffith University, PA Hospital, Queensland Health, AHRECS and Joe-Anne Kek-Pamenter.

 Click here to download Project Flyer

        Promotional video about participating in research                                Jillian Kingsford-Smith shares her citizen research
        proudly produced by THC research Dr Daniel Harvie                               experience and feedback from the project.