Research Report Summary

The James Lind Alliance Priority Setting Partnership (PSP)

In 2023-2024, Retina Australia participated in a James Lind Alliance Priority Setting Partnership (PSP) as part of a 14-member Steering Committee to identify the top 10 research priorities for inherited retinal diseases (IRDs) in Australia, from the perspectives of individuals with lived experience and health professionals.

In this report, the Steering Committee shares its learnings from undertaking the PSP surveys and hosting an in-­person educational event for the IRD community with the aim to provide feasible strategies for researchers and clinicians to undertake more accessible research and better facilitate information access for individuals with a vision impairment.

As members of the Steering Committee, Retina Australia’s Chair, Leighton Boyd AM, Company Secretary, Rosemary Boyd OAM, Director, Associate Professor Anai Gonzalez-Cordero and CEO, Julia Hall were contributing authors on this research paper.

Co-Developed Recommendations 
1. Build meaningful connections with individuals who have lived experience and community organisations
  • Establish a committed steering committee comprising individuals who are trusted in the community and connected to your target audience
  • Allocate appropriate time and resources to develop partnerships
  • Provide communication plans and promotional material for partners to use when supporting recruitment
  • Implement a study newsletter to keep partners and steering group members engaged and feeling valued
2. Shift the focus to people-­first language and a social model of disability
  • Use people-­first language, with good practice to ask each individual their preferred terminology
  • Underpin research practices with the social model of disability
  • Invite individuals with lived experience to contribute to the research team as equal partners
3. Implement strategies to ensure all individuals can fully participate
  • Be proactive in providing a list of available supports and considerations to each participant before an event
  • Invite participants to share any accessibility requirements that will allow them to fully participate
  • Allocate appropriate time in meetings for written content to be read out loud
  • Send any content shared in meetings at least one week in advance.
  • When in a group setting:
    • ensure the facilitator is appropriately trained to work with this cohort;
    • invite speakers to announce their name before speaking;
    • use verbal social cues as needed; and
    • avoid the use of the “raise hand” or chat function if meeting online
  • When meeting in person:
    • assign staff to provide navigation support, with descriptive directions of the environment, location, and navigation supports that will be provided, and share this information before the event;
    • design the physical space to ensure comfortable navigation with a guide dog, white cane, and/or support person; and
    • offer attendees access to an audio induction loop
4. Move away from the default methods of information provision
  • Create video explainers, with spoken English and written transcriptions (ie, not just subtitles)
  • Minimise use of visuals that are unnecessary, embedding alt text for any necessary visuals
  • Provide written information in multiple formats (ie, digital copies and other modes such as audio) that are compatible with screen readers, can be zoomed in on, and with a QR code for online access
  • Implement accessibility recommendations (eg, font size) from relevant consumer organisations into written documents and presenter templates (Supporting Information)
  • Use freely available accessibility checkers when creating Word or PDF documents
  • Ensure that all punctuation is provided to ensure that screen readers pick up the text correctly
  • Consider using dot points to provide breaks in text
5. Adapt Data Collection Methods
  • User-­test data collection methods with several individuals with lived experience, incorporating their feedback as appropriate
  • Provide the option for participants to request an alternative format and/or language for study participation
  • Allocate a budget for providing an alternative format and/or language for study participation (eg, Braille) in case participants request adaptations

These recommendations aim to improve equitable access to research and clinical information for individuals with vision impairment. 

 

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