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 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 designed a set of templates that are focused on meeting a broad range of information accessibility needs. Click on the links below to download (or watch) a copy of the template and user guide for each format:
We designed a set of templates that are focused on meeting a broad range of information accessibility needs. Click on the links below to download (or watch) a copy of the template and user guide for each format:
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 Whiteway and Colleen Lewis.
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 Whiteway and Colleen Lewis.
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.
Like to know more?
Please email the Lead Researcher, Dr Fleur O’Hare: fohare@cera.org.au
Contact Dr Fleur O’Hare
Please email the Lead Researcher, Dr Fleur O’Hare: fohare@cera.org.au