Disability-Inclusive Research Co-Design Guide

About this guide

This guide helps research teams engage people with lived experience of disability as contributors to study design, accessibility planning, technology development, participant-facing materials, procedures, and interpretation safeguards. The goal is to move from one-time feedback toward a traceable process in which lived-experience input can influence research decisions.

Core principle: meaningful engagement requires more than asking whether a finished study is accessible. Research teams should identify decisions that participants and lived-experience contributors can genuinely influence, make the engagement process accessible, document recommendations, and show what changed or why a recommendation could not be adopted.

Define the decisions open to co-design

Before engagement begins, identify which study decisions are still changeable — for example recruitment language, consent format, visit length, communication methods, sensory settings, physical setup, technology controls, pause/stop procedures, accommodation workflows, behavioral measures, staff instructions, and dissemination materials. Avoid inviting contributors to “co-design” a process when all substantive decisions have already been finalized.

Seek relevant and varied perspectives

Disability is not a single experience. Seek perspectives relevant to the study’s likely access demands and population — which, depending on the research, may include physical or mobility, sensory, cognitive, intellectual or developmental, communication or speech, chronic illness or energy-limiting, mental-health-related, and multiple or intersecting access perspectives. Do not assume one contributor represents an entire disability community, and document the scope and limitations of the perspectives included.

Make the engagement process accessible

Co-design session workflow

• 01Orient

  Explain the study, technology, research question, known constraints, and which decisions contributors can influence.

• 02Experience

  When safe and appropriate, allow contributors to review or interact with the relevant materials, workflow, prototype, or research environment using needed accommodations.

• 03Identify barriers

  Ask what could make recruitment, consent, participation, communication, technology use, data collection, or follow-up inaccessible or unnecessarily difficult.

• 04Generate options

  Ask contributors what accommodations, alternatives, or design changes could reduce the identified barriers.

• 05Prioritize

  Discuss feasibility, safety, scientific requirements, participant burden, and which changes should be tested first.

• 06Test and refine

  Evaluate modifications with relevant users when feasible rather than assuming the proposed solution resolves the barrier.

• 07Close the loop

  Tell contributors what changed, what did not change, and why.

Co-design decision log

Use a decision log so engagement can be traced to concrete research or technology changes.

Questions to ask contributors

• What part of this procedure would be hardest to access?

• What would make the instructions or consent easier to use?

• Is there anything about the physical or sensory environment that should be adjustable?

• Could the technology require a movement, communication method, or response that some participants cannot use?

• What could researchers misinterpret about participant behavior?

• What would make it easier to pause, request help, modify the procedure, or stop?

• How should participants be told what accommodations are available?

Indicators of meaningful engagement

Research teams can document the number and range of contributors engaged; the study stages at which engagement occurred; barriers and recommendations identified; the proportion of recommendations resulting in modifications; reasons recommendations were not adopted; the accessibility of the engagement process itself; contributor feedback on whether their input was understood; and whether contributors were informed about resulting changes.

Integration with Accessible Adaptive VR

Co-design findings feed directly into the Barrier → Accommodation → Participant Response → Design Modification process described in the Accessible VR Clinical Research Toolkit. Relevant changes can then be reflected in the Disability-Inclusive Clinical Research Accommodation Planning Form, the Participant Pause, Stop, and Modification Procedure, the Behavioral Data Interpretation Safeguards, and in the study protocol, participant materials, technology, and staff training.

Implementation note: the original eight-participant Skyward Sojourn study was not designed as a disability co-design study, and disability status was not systematically documented. This guide supports the current pilot/refinement phase of the broader Accessible Adaptive VR framework and future ethically reviewed implementation. It should not be used to characterize the earlier study as evidence of disability engagement.