Co-Design for Participatory Neurodiversity Research: Collaborating With a Community Advisory Board to Design a Research Study

Abstract

Inclusive research practice characterized by the involvement of neurodivergent people in meaningful roles has been described as a “requirement of excellence” in neurodiversity research. This report describes a co-design process in partnership with a Community Advisory Board undertaken to develop a research study involving neurotypical and neurodivergent students as participants. From the formation of the partnership with seven Community Advisory Board members to the outcomes of the co-design process, this report details the methods associated with each step, as well as the benefits and challenges collated in collaboration with members of the Community Advisory Board. Opportunities for improvement in co-design for participatory neurodiversity research are suggested.

Neurodiversity and cognitive load in online learning: A focus group study

“…Since inclusive research practice has been described as a “requirement of excellence” in neurodiversity research, the study was co-designed in partnership with a Community Advisory Board [ 25 ]. Such participatory research involving community partners is conducive to greater external validity and translatability [ 26 , 27 ].…”

Methodological adjustments for experimental studies including neurodiverse participants: A checklist for before, during, and after laboratory visits

“…Instead of simply copying and pasting this checklist, researchers should consider involving neurodiverse individuals in the planning stages of their projects by forming their own advisory board to review their experimental design and amend their protocol accordingly. An advisory board can help ensure that research practices are as inclusive, ethical, and valid as possible [9] .…”

Participatory Research Emergent Recommendations for Researchers and Academic Institutions: A Rapid Scoping Review

“…To summarize how we conceptualize logistical considerations, we highlight the importance of access to resources and resource redistribution (especially in relation to money, time, and energy), we highlight the importance of considering location and space (ensuring spaces are accessible, welcoming, and safe), and that thoughtful preparation and support is offered (transport to and from research location, and materials for before, during, and after the research encounters). We also emphasize the value of frank conversations with co-researchers, communities, and advisory groups about feasibility, including what elements are practically possible as well as meaningful in the available timeframe (see Le Cunff et al, 2023, for helpful discussion of the value of meaningful collaboration with a community advisory group).…”