Clasp: Digital Tactile Anxiety Management for the Health Internet of Things

Although there is no register of people with autism in the UK, the National Autistic Society estimates that 700,000 people in the UK are on the autistic spectrum. Beyond this, however, almost all of us suffer from anxiety - in some form - during our lifetime. According to Anxiety UK, 1 in 6 people experience some form of 'neurotic health problem', of which the most common are anxiety and depression. Anxiety UK estimates that more than 1 in 10 people are likely to have a 'disabling anxiety disorder' at some stage in their life (http://www.anxietyuk.org.uk/about-anxiety/frequently-asked-questions/). And these figures do not include the many and varied minor forms of anxiety that all of us experience on a regular basis.

The aim of this project is to co-design and co-produce, with a cohort of autism sufferers, their friends and family, a tactile digital anxiety management and peer-support tool to assist people with autism in understanding and managing their anxiety in social engagement.

The prototype Clasp system will be developed to have three core design components:

1) a tactile digital anxiety object which communicates levels of anxiety to a connected smartphone, implemented using a squeezable Bluetooth-connected digital 'stress ball';
2) a peer-support network communication facility via SMS and distributed Social Network Service (SNS) status updates;
3) an anxiety data aggregator and visualization for personal and community feedback.

If use of the 'stress ball' reaches user-defined thresholds, a user-defined response will be triggered. The user can view their trigger history, which will show times and locations when triggers were reached. Hence, Clasp will allow those with autism to track their anxiety levels over time, to reflect on what made them anxious in different situations, to experiment with interventions that alleviate their anxiety, and to get support from their peers in situations of high anxiety.

The specific features of Clasp will come about through an in-depth engagement with a wide variety of stakeholders, including those with autism. Clasp will be underpinned by a study into how anxiety in autistic adults is impacted by and impacts their social engagement and the role digital technology may play in managing anxiety. Clasp will evolve through a process that iteratively and collaboratively captures the requirements for an anxiety management and peer-support system, builds a prototype for such a system, and evaluates key design implications for future development of Clasp and similar digital tools.

We will also investigate versions of Clasp targeted to non-autistic users, thus addressing anxiety issues in a broader range of users including those with mental/learning disabilities as well as people more generally.

Our key objectives related to impact are:

(1) To engage with users from the beginning of the process to ensure that end-users take a full part in the research and prototype design, and take ownership of the resulting product;

(2) To open-source the code of the prototypes produced and encourage independent, continued development of the code through an appropriate license, e.g., Creative Commons;

(3) To encourage further development, maintenance and application of the prototypes by starting a social enterprise or partnering with an existing social enterprise;

(4) To influence the provision of services to vulnerable groups such as HFA adults and, in particular, to influence the role of digital technologies in service provision, by providing evidence on the effectiveness (or otherwise) of digital tools for supporting HFA adults and other end-users in anxiety management;

(5) To influence the use of digital tools for anxiety management in general by making prototypes available online and crowdsourcing examples of use with the prototypes.

The Clasp project is fundamentally a co-design project at its heart. We will follow user engagement strategies which we have successfully applied in previous projects (see Sec 6. in Case for Support). We will work in real partnership, initially with autistic people, to co-design and develop Clasp further to make it more user friendly and accessible by a large proportion of the individuals on the higher end of the ASD spectrum. It has also been identified and suggested by various health and social care professionals, as well as 3rd sector organisations, that there is a great deal of potential to expand the use of the devices into other service users groups such as: (i) Learning Disabilities, (ii) Mental Health, (iii) Physical Disabilities, and (iv) Victim Support/Domestic Violence. We have therefore designed the work plan (see Case for Support) in phases: we initially will focus on autism and then later broaden to some of these other user groups. We have the necessary contacts in place to bring in these other user groups in Phase 2 of the project.
Our approach builds a partnership between academics and end-users, who jointly decide on research questions and co-design/co-produce digital prototypes together. We consider this approach to be fundamental to our user engagement strategy. Our many years of experience with this form of research 'in the wild' has shown, through this approach, end-users and other stakeholders take ownership of the process and prototypes and hence have a vested interest in the sustainability of the products over the longer term. This approach to sustainable innovation has a track record of success: (1) The #patchworks project (a 9 month Catalyst project) was taken up by a consortium of charities in the NW of England and became a critical part of a successful bid for £350K of further funding from the Big Lottery Fund; (2) The Local Trade project (a 6 month Catalyst project) was taken up by a local trading association, which successfully obtained an additional £250K of funding for further development and commercialization.