Co-designing digital technologies with people with cognitive disabilities: challenges and opportunities, by Vanessa Zervogianni
Digital technologies for people with cognitive disabilities have been gaining increasing popularity in the past decade. Many qualified professionals in psychology and software development have led the design and implementation of such technologies. However, explicit input from the community they look to support often isn’t sought and, even when it is, people with cognitive disabilities are not involved in all stages of the design.
This can cost time, money and other resources as products fail to meet the consumers’ needs and the development teams are forced to redesign. This in turn can lead to frustrated reviews or more generally to scepticism around the potential of digital technologies to support people with cognitive disabilities.
Throughout my career and especially in the BETA project I recently coordinated, I’ve put the user at the heart of the design process. In BETA, we collaborated with the autism community to co-develop guidelines for the evaluation of digital technologies for autistic people.
In one of the studies we conducted, we identified what types of evidence the autism community valued and wanted to see provided to enable an informed choice to be made regarding digital tools. The community reached an agreement on three categories for which evidence is required: reliability, engagement and the effectiveness of the technology. Consensus was also reached on four key sources of evidence for those three categories: hands-on experience, academic sources, expert views and online reviews.
The framework that resulted from this study allows for any technology to be evaluated for the level of evidence identifying how effective it is. The framework can be used by autistic people, their families, practitioners and researchers to ensure that decisions concerning the provision of support for autistic people are informed by sufficient evidence.
Q1. What challenges do you envisage you might face when co-designing with people with cognitive disabilities?
I think the primary challenge is variability on many levels, like literacy and digital literacy, in particular, as well as the level of verbal or motor skills. As the range of cognitive disabilities is so broad, it would be hard to co-design a one-size-fits-all piece of technology. But I see an opportunity rather than a hurdle there. Technology - unlike other traditionally used methods e.g., pen and paper - offers an immense number of personalisation options rendering one tool usable and useful to a diverse user-group.
As researchers, we may come up against reluctance or even rejection from the people we seek to collaborate with as they may think they will undergo yet another test or evaluation. Besides that, people with cognitive disabilities may accept to participate but be inclined to give answers they think would appeal to the researcher/facilitator.
This is a common concern in the user experience field and there are ways to address it. For example, open-ended questions or storytelling. We also need to keep in mind that some co-designers may be non-verbal and we should therefore be prepared to offer another creative medium for them to express their ideas such as drawing.
Q2. Have you identified any approaches that have proved successful when co-designing with people with cognitive disabilities?
What I believe is crucial is to make every co-designer feel they are a valued member of a group working towards a common goal. We should approach them as equal partners and avoid tokenism.
In my experience, the relation between the facilitator and the co-designers is critical for the success of a co-design process. The facilitator needs to be and appear easy to reach and interact with, providing information, clarifications and reassurance when required. When giving instructions, they should use clear language avoiding long sentences or figurative speech.
When co-designing with people with cognitive disabilities, it’s also important to provide a predictable environment. Ideally, we use the same place for each session of the co-design process. Every session begins with a summary of the previous phase, the goals of the current session and some warm-up activities.
Depending on the cognitive level of the co-designers, the facilitator can suggest a voting system after all opinions and ideas have been put forward. This will allow everyone to share their ideas and potentially update their preferences.
In the BETA project, we chose to partner with the autism community using the Delphi method, where experts on a field, co-ordinated by a facilitator, reach a consensus on a specific topic whilst communicating anonymously on an online platform.
Q3. Can you foresee any ethical difficulties/concerns during the co-design process with people with cognitive disabilities?
As researchers, we need to make sure we don’t inadvertently guide the co-designers to give specific answers that would seem appealing to us. We should instead strive for the freedom of expression of our design team without imposing any personal expectations.
Respecting privacy is vital, especially in cases where audio and/or video footage is taken during the design process. We should have explicit consent from parents/carers to share image or voice with our students or colleagues.
Finally, I’d like to emphasise the value of communicating research outcomes to the design partners. The idea extends to the broader area of community-based participatory research. Research collaborators should not be treated as a means to an end or as a nice-to-have. In particular when they are co-designers, therefore included in all stages of the design, they should not be left out when it comes to the communication of outcomes. At the same time, the means of communication must be accessible in terms of format and content and that, to me, should be an ethical commitment for the researcher.
To find out more about the BETA project, check out our website available in English, French and Spanish: beta-project.org
Our paper that details our co-design process and results was published in Autism journal and it’s free to download in full: https://doi.org/10.1177%2F1362361319898331
If you have questions about BETA and its research outcomes, you can contact me at email@example.com
Vanessa Zervogianni is a User Experience (UX) researcher with a particular interest in technology-based education.
She is currently working as a Research & Education coordinator at the Usher Institute in Edinburgh, where data is collected and analysed to help understand and advance the health of young people through innovative collaborations in a global community.
She was a research fellow at the Institute for Intelligent Systems and Robotics at Sorbonne University and a visiting fellow at the Centre of Applied Autism Research at the University of Bath, England.
In the context of the BETA project (Building Evidence for Technology and Autism) she investigated the evidence base of interactive digital tools for autistic users and the discrepancy between the user experience of such tools and the scientific robustness of the corresponding studies.