RESEARCH
The MAIN Project
The Meeting Access and Inclusion Needs or ‘MAIN Project’ aims to co-design information templates, tools and resources that researchers can adapt to prospective participants’ specific needs.
The MAIN Project adopts a community-based co-design approach involving research partners with lived experience as members of the project team. It also engages leading vision support agencies throughout the research life cycle.
Shane’s story
In this video, Consumer Research Partner, Shane Sommerville, talks about being involved in the MAIN project.
David’s story
Listen to MAIN Project Co-leader David Foran, talk about the benefits of sharing lived experience perspectives to help shape research projects. He refers to the MAIN project as an example in the below audio clip.
Enhancing informed consent practices
As part of the planning stages, we conducted a scan of the literature and consolidated evidence into eight principles for enhancing accessibility and inclusion in informed consent practices.
- Foster inclusion through a comprehensive audit and delivery of access needs.
- Engage support and advocacy organizations for cultural competency and connection.
- Develop trust and safety through having people with lived experience as part of the project team.
- Prioritise choice and control over preferred information formats.
- Ensure research staff can develop knowledge and skills, and be able to execute, a tailored process to meet varying information access needs.
- Ensure requisite resourcing to support the delivery of an accessible and equitable process.
- Enable agency and flexibility in consent options (i.e., offer tailored and different methods to record consent).
- Recognise and respond to the heterogeneity within the community/cohort.
As part of the planning stages, we conducted a scan of the literature and consolidated evidence into eight principles for enhancing accessibility and inclusion in informed consent practices.
- Foster inclusion through a comprehensive audit and delivery of access needs.
- Engage support and advocacy organizations for cultural competency and connection.
- Develop trust and safety through having people with lived experience as part of the project team.
- Prioritise choice and control over preferred information formats.
- Ensure research staff can develop knowledge and skills, and be able to execute, a tailored process to meet varying information access needs.
- Ensure requisite resourcing to support the delivery of an accessible and equitable process.
- Enable agency and flexibility in consent options (i.e., offer tailored and different methods to record consent).
- Recognise and respond to the heterogeneity within the community/cohort.
Information templates
We have designed a set of templates to meet a broad range of information accessibility needs. Use the links below to download or view each template, along with its accompanying user guide.
- Vision accessible template for written consent
- Vision accessible template for verbal consent
- Accessibility guide for printed consent information
- Researcher declaration for verbal consent
- Consent discussion script example
- Audio template along with the transcript and audio format user guide
- Video template with a transcript and video format user guide
- PowerPoint template for video with text only
We have designed a set of templates to meet a broad range of information accessibility needs. Use the links below to download or view each template, along with its accompanying user guide.
- Vision accessible template for written consent
- Vision accessible template for verbal consent
- Accessibility guide for printed consent information
- Researcher declaration for verbal consent
- Consent discussion script example
- Audio template along with the transcript and audio format user guide
- Video template with a transcript and video format user guide
- PowerPoint template for video with text only
Acknowledgments
The development of the vision-accessible version of the InFORMed PICF template and the accessibility audit was proudly supported by CT:IQ.
A sincere thank you to the individuals who shared their expertise, experiences and perspectives for this project: David Foran, Daniel Talko, Kevin Lee, Shane Somerville, Debra Simons, Grace King, Michael Burmeister, John Paul Cruz, Caitlin Alsop, Michelle O’Brien, Perry Cunningham, Karen Pomeranz, Lyn Whitewa, Dr Colleen Lewis, Dr Annmaree Watharow and Dr Ronelle Hutchinson.
We extend our appreciation to the organisations who provided invaluable insights and supported this research including Vision Australia, Blind Citizens Australia, Children and Young People with Disability Australia, NextSense, Knowable.Me, Able Australia, Retina Australia and Information Alternatives.
The development of the vision-accessible version of the InFORMed PICF template and the accessibility audit was proudly supported by CT:IQ.
A sincere thank you to the individuals who shared their expertise, experiences and perspectives for this project: David Foran, Daniel Talko, Kevin Lee, Shane Somerville, Debra Simons, Grace King, Michael Burmeister, John Paul Cruz, Caitlin Alsop, Michelle O’Brien, Perry Cunningham, Karen Pomeranz, Lyn Whitewa, Dr Colleen Lewis, Dr Annmaree Watharow and Dr Ronelle Hutchinson.
We extend our appreciation to the organisations who provided invaluable insights and supported this research including Vision Australia, Blind Citizens Australia, Children and Young People with Disability Australia, NextSense, Knowable.Me, Able Australia, Retina Australia and Information Alternatives.
Publications
We have published our collaborative work if you would like to find out more.
We have published our collaborative work if you would like to find out more.
Like to know more?
Please email the Lead Researcher, Fleur O’Hare: fohare@cera.org.au
Contact Fleur O’Hare
Please email the Lead Researcher, Fleur O’Hare: fohare@cera.org.au