How a framework for remotely enabled co-design benefits a wider project

Effective co-design is essential to research projects that are evaluating new approaches to managing health. Traditionally co-design is carried out face-to-face, but researchers are now developing a framework that enables co-design to be done remotely. Here Anna Morris (Research Assistant in Child & Adolescent Psychiatry, King's IoPPN), Dr Johnny Downs (Senior Clinical Lecturer and NIHR Clinician Scientist in Child & Adolescent Psychiatry, King's IoPPN; CAMHS Digital Lab Lead) and Stephen Douch (Design Lead, CAMHS Digital Lab) write about the FREDY project and how this new framework is helping develop the use of wearables to manage ADHD.

We have been developing a Framework for Remotely Enabled co-Design (FREDY). This forms part of a larger project called REMAIN, which aims to change how attention deficit hyperactivity disorder (ADHD) is managed and treated in the NHS, using wearable actigraphy devices (pictured below). 

Data from wearable devices can give us a detailed and unbiased picture of a person’s activity levels, which provides the potential to detect changes in activity and complement self-reported information from the individual themselves or their families and teachers. The overarching goal of REMAIN is to introduce and evaluate the usefulness and acceptability of a low-cost, child-friendly wearable actigraphy device to measure physical activity as people go about their daily lives.  

Adapting co-design approach  

To address the challenge of developing a suitable wearable device for children with ADHD, the project embarked on a co-design process involving a multidisciplinary team of clinicians from the South London and Maudsley NHS Foundation Trust, researchers from King's College London, industrial designers associated with the Helen Hamlyn Centre, and engineers from MindPax and most importantly families and children with lived experience of ADHD.  

Co-design typically involves stakeholders meeting in a shared space and engaging in activities facilitated by visual aids like whiteboards and post-it notes. However, the onset of the COVID-19 pandemic meant a shift to remote working, highlighting a particular challenge for a project that aimed to design a device tailored for children with ADHD.  

FREDY was conceived as a strategy to adapt co-design for effective remote collaboration while ensuring it remained suitable and engaging for children with ADHD. FREDY leverages design principles such as The Double Diamond Framework and Agile Design, alongside theoretical principles like Diversity for Design, to establish a comprehensive framework. This framework delineates how traditional co-design methods can be modified and tailored to align with the unique needs and preferences of children with ADHD. 

What questions are we trying to answer with this FREDY project? 

• What are the challenges and benefits of remote codesign? 

• What is the ideal design approach to understand the preferences of children with ADHD, towards wearable technologies in a remote setting? 

• How do we best reconcile qualitative data collection approaches with professional design considerations that align with the user group's needs and project objectives? 

• How to successfully design with a multi-disciplinary team to prioritise competing views, to arrive at decisions and solutions collaboratively? 

Central to FREDY is working with children and parents and we want to demonstrate how they can be involved in research remotely, and the advantages this could bring in terms of helping to shape research projects and new approaches as well as managing busy schedules.  

We also want other clinical academics in this area of research to be aware of this framework to show them how remote codesign is possible/preferable with neurodiverse children and that including parents as key co-researchers can help to balance power distributions, and increase familiarity, support accurate articulation and help maintain concentration. We also think FREDY should be considered as an approach to co-designing with other vulnerable populations where coming together in person may not be desirable. 

Recommendations and challenges 

Our findings from approaching this remote co-design project have been published in Frontiers in Psychiatry. Within this, we highlight a key framework for further remote co-design and areas where this works well, and the challenges that the approach faces.  As part of this we developed a number of recommendations on how to develop effective, remote co-design: 

• Utilise remote technologies such as phone calls and video conferencing, and choose the platform based on researcher and user needs.  

• Take advantage of conducting research in a home environment to increase research accessibility for under-represented groups. 

• Include caregivers as key co-researchers to ensure equitable power distribution, familiarity, support accurate articulation, and help maintain concentration. Incorporate both individual sessions and group sessions, while sense-checking individual interview findings and potential design solutions with the advisory group at each stage. 

• Employ ongoing communication between all those involved. 

• Be closely familiar with neurodiverse needs before commencing the design process to engage end-users. 

• Adopt a flexible, agile, adaptive, and creative approach, allowing child-caregiver pairs to choose the preferred time, pace, length, and order of activities, thus catering to their needs, minimising time burden and maximising inclusion. 

• Utilise diverse and creative methods for data collection (e.g., combined paper/online modalities with a variety of tasks and activities). 

• Employ iterative processes in each stage, to successfully prioritise competing views, and arrive at decisions and solutions collaboratively. 

• Be transparent in design decisions by using design tools that are accessible and understandable to different groups and by communicating the trade-offs between what was needed in the design and limitations of including certain features.  

We have experienced the benefits from using a remote co-design approach for all those involved, and we hope that it is a framework that can be further developed and adopted across a range of research projects.  

For more information, please visit the CAMHS Digital Lab website.