# Beyond a buzzword: the need for shared language, education, and enhanced reporting of disability inclusive co-design research

## TL;DR

The paper argues that co-design in disability research needs clearer definitions, better training, and improved reporting to ensure it is truly inclusive and impactful.

## Contribution

The paper proposes four urgent recommendations to enhance the integrity and impact of disability-inclusive co-design research.

## Key findings

- Inconsistent definitions and practices have undermined the rigor of co-design in disability research.
- A shared language and reporting framework are needed to ensure transparency and accountability in co-design.
- Training and ethical engagement are essential to avoid tokenism and foster effective collaboration.

## Abstract

Co-design is an increasingly prominent method for achieving disability-inclusive research. Co-design draws attention to the value of involving people with lived experience of disability in shaping research questions, methods, and outcomes, making it an ideal vehicle for inclusion. Yet, the rise in popularity of co-design in disability research has created challenges. Inconsistent definitions, misaligned practices, and inadequate reporting have undermined both the rigour of the method and its potential to generate meaningful and impactful outcomes.

In this commentary, we argue that safeguarding the future of disability inclusive co-design requires a systemic shift towards accountability and transparency. We propose four urgent recommendations to enhance and maintain the integrity and impact of co-design: 1. Establish a shared language that distinguishes levels of participation, clarifies epistemic assumptions, and articulates underlying values. This is critical to ensure that co-design claims accurately reflect the nature of involvement. 2. Build capacity and capability for researchers and people with lived experience of disability. This includes in facilitation skills, ethical engagement, inclusive communication, and navigating power dynamics, to avoid tokenism and collaborate more effectively. 3. Develop a co-design-specific reporting framework to make relational, procedural, and decision-making processes more transparent. 4. Mandate better reporting of co-design practices by funders, journal editors, and institutions to ensure accountability and reportable rigour of co-design research with people with disability.

Ultimately, co-design can either be a powerful tool for inclusive research or a hollow promise that perpetuates the exclusion it seeks to remedy. Adopting these recommendations for language, capacity, and standard, mandated reporting are essential steps for safeguarding the integrity of the method. It will also support more accountable, authentic, and impactful research that truly reflects the voices, priorities, and lived experiences of collaborators with disability.

Co-design is a way of doing research where people with disability work with researchers to create, carry out, and share research. This method is now very popular. People with disability should have a say about how and what research is done. But the word “co-design” is sometimes used too often without really involving people with disability. In this paper, we talk about four important things that need to be improved to make co-design better. First, we need to use clear language, so everyone understands co-design and how it is different from other types of research. Second, everyone who does co-design research needs proper training and support to work together. Third, we need better ways to report what was done in each study, who was involved, how choices were made, and how people with disability were included. Fourth, research publications, funding agencies, and universities should ask for this reporting from researchers so that co-designed research can be trusted. By improving how co-design is done and reported, we can make sure it leads to more inclusive, fair, and helpful research that meets the needs of people with disability.