Clasp: Digital Tactile Anxiety Management for the Health Internet of Things
Lead Research Organisation:
Lancaster University
Department Name: Computing & Communications
Abstract
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.
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.
Planned Impact
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.
(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.
Organisations
- Lancaster University (Lead Research Organisation)
- Autism Initiatives (Collaboration, Project Partner)
- Lancashire Care NHS Foundation Trust (Collaboration)
- LANCASHIRE COUNTY COUNCIL (Collaboration)
- UNIVERSITY OF CAMBRIDGE (Collaboration)
- University of Vienna (Collaboration)
- Lancashire County Council (Project Partner)
- Tuesday Evening Social Club (Project Partner)
People |
ORCID iD |
Jon Whittle (Principal Investigator) |
Publications
Ferrario, M.A.
(2016)
Values-first Software Engineering: Elements of Theory in Practice.
Simm, W.
(2016)
Anxiety and Autism: Towards Personalized Digital Health
Simm, W.
(2016)
Snap: DIY In Personalized Digital Health Devices
Whittle, J.
(2015)
A Well-Being Internet of Things
Title | Walking with data: mapping wearable and digital data in Morecambe Bay |
Description | Art installation as part of Data public conference based on data collected with SnAPP cloud platform (March2017) |
Type Of Art | Artistic/Creative Exhibition |
Year Produced | 2017 |
Impact | lancaster-based exhibition - open to academic and general public. Work included in 2 x PhD studies chapters (HighWire DTC and Creative Exchange students) |
URL | http://datapublics.net/ |
Description | We conducted an investigation with adults diagnosed with high functioning autism and their support, to identify the potential role of personal informatics and wearable technology in helping to better understand and manage anxiety through tactile feedback, activity tracking, biosensing and recording intentional interactions. We have specifically looked at individual experiences of anxiety, what kinds of information should be captured and how it might be presented. We found that as well as helping to identify triggers to the negatives and how best to manage these, the device should help investigate how positive experiences can be appreciated and further encouraged. Focus on the negative may attach negative connotation to the device. The detail created by a sensor such as the Snap wristband stretch sensor that has a high resolution of output creates a number of challenges: 1) characterizing individual styles of interaction; 2) the ambiguity of data captured 3) high risk of false positives. A lower resolution sensor (such as the momentary switch in the new Clip prototype device, which is currently under development) may help with addressing these challenges |
Exploitation Route | The participants 'bought-in' to the process and took ownership of the devices they played a role in creating. This process of 'making' became a part of therapy and created a new, shared understanding between participant, support and researchers. |
Sectors | Communities and Social Services/Policy Creative Economy Digital/Communication/Information Technologies (including Software) Healthcare |
URL | http://myclasp.org |
Description | A broad range of outreach and wider stakeholder engagement programme described under the 'Collaboration & Partnership' which included four strands of activities (or event series). Such programme actively engaged with well over 350 people including health practitioners, service users, academics and the general public |
First Year Of Impact | 2015 |
Sector | Communities and Social Services/Policy,Creative Economy,Digital/Communication/Information Technologies (including Software),Healthcare |
Impact Types | Cultural Societal |
Title | Clasp Video: One Year in Review |
Description | Short video suitable for academic dissemination and public outreach |
Type Of Material | Improvements to research infrastructure |
Provided To Others? | No |
Impact | This video was uploaded at the time of ResearchFish publication |
URL | https://youtu.be/g6GQo_GmGiY |
Title | Clasp Website |
Description | Website created to act as a publication tool, repository of information and communication tool |
Type Of Material | Improvements to research infrastructure |
Provided To Others? | No |
Impact | The website has reached X visits |
URL | http://myclasp.org/ |
Description | Autism Initiatives: Health-Wearables Co-Design Series |
Organisation | Autism Initiatives |
Country | United Kingdom |
Sector | Charity/Non Profit |
PI Contribution | Organisation, delivery, facilitation and data analysis of a series of digital health wearables design workshops involving adults diagnosed with autism and their support (~20 people engaged in total). Events included - 3 x health wearables co-design and development sessions (May-June) - 3-week Summer Study evaluating SNap, one of the health wearable prototypes emerged from the development process (Aug) The above events were held in Fleetwood (partner venue) and at Lancaster University |
Collaborator Contribution | The partners helped with the planning and organisation prior the events; they provided support to the participants, facilitated response elicitation and engagement during the events and feedback after each event. |
Impact | - design, development and evaluation of a number of digital health devices including 'Snap', a tactile wearable device that captures anxiety interaction for self refelction. - process and outputs evaluation and description have been published in CHI2016 and ICSE2016 as per information submitted |
Start Year | 2015 |
Description | Cambridge Science Festival: Technology Kitchen |
Organisation | University of Cambridge |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | Organisation of 'Technology Kitchen ' a one-day event exploring, designing and making digital-health wearable lo-fi prototypes the event was held at Cambridge Science Festival 2015 |
Collaborator Contribution | Facilitation, volunteers recruitment, advertising, marketing. |
Impact | - 250 people actively engaged (94 children + 150 adults) - 125 prototypes produced and photographed - 35 video interviews recorded - Photo gallery and video on Clasp project website The event was interdisciplinary in nature and involved Faculty of Medicine, LICA, the School of Computing and Communications, and the School of Chemistry, at Lancaster University. Professional video makers (Ourus) were recruited to document the event and staff from Autism Initiatives provided input and feedback. Further info: http://myclasp.org/technology-kitchen-reflections/ |
Start Year | 2015 |
Description | Clasp Partners: Health-Wearables Engagement Series |
Organisation | Autism Initiatives |
Country | United Kingdom |
Sector | Charity/Non Profit |
PI Contribution | Organisation and facilitation of multi-disciplinary and interagency digital health events, including: - 1x Data Workshop, exploring the challenges of personal data life cycles. - 1 x Materials and Sensors Workshop, investigating the sustainability of materials and production models of digital health wearable devices - 1 x Technology Kitchen, health wearables design fiction leading to the design of seven lo-fi prototypes and a technology proof of concept, used during wider outreach events (e.g. Cambridge Science festival) |
Collaborator Contribution | Participation, digital health technology co-design and feedback |
Impact | the collaboration is multidisciplinary (arts, design, computing, health, chemistry) Outcomes included proof of concepts for future digital health wearables further information: http://myclasp.org/moodcons/ http://myclasp.org/materialsandsensors/ |
Start Year | 2015 |
Description | Clasp Partners: Health-Wearables Engagement Series |
Organisation | Lancashire County Council |
Country | United Kingdom |
Sector | Public |
PI Contribution | Organisation and facilitation of multi-disciplinary and interagency digital health events, including: - 1x Data Workshop, exploring the challenges of personal data life cycles. - 1 x Materials and Sensors Workshop, investigating the sustainability of materials and production models of digital health wearable devices - 1 x Technology Kitchen, health wearables design fiction leading to the design of seven lo-fi prototypes and a technology proof of concept, used during wider outreach events (e.g. Cambridge Science festival) |
Collaborator Contribution | Participation, digital health technology co-design and feedback |
Impact | the collaboration is multidisciplinary (arts, design, computing, health, chemistry) Outcomes included proof of concepts for future digital health wearables further information: http://myclasp.org/moodcons/ http://myclasp.org/materialsandsensors/ |
Start Year | 2015 |
Description | NHS: Health-Wearables Dissemination Series |
Organisation | Lancashire Care NHS Foundation Trust |
Department | DIgital Health Innovation |
Country | United Kingdom |
Sector | Public |
PI Contribution | Organisation, delivery, and facilitation of a series of technical demos with NHS health practitioners |
Collaborator Contribution | Identification and enagagement with potential information champions; mailing list coordination and attendance to events, dissimination and publicity |
Impact | The collaboration resulted in the delivery of the following events: - 2 x Show and Tells (technical demonstrations) engaging health practitioners (e.g. NWC Connected Health Ecosystem event) - 1 x Creative workshop with 10 NHS professionals - 2 x Invited research visits at the Vascular Lab, Royal Blackburn Hospital for collaboration spin-out in vascular health |
Start Year | 2015 |
Description | Values in Computing |
Organisation | University of Vienna |
Country | Austria |
Sector | Academic/University |
PI Contribution | elivered Seminar and a Show & Tell at TUW. This resulted in the succesful write up and submission of CHI2017 workshop on Values in Computing |
Collaborator Contribution | Hosted three lancaster university academic over a two day visit. contributed time in kind with the organisation and submission of the workshop paper. |
Impact | "Values in Computing" CHI2017 workshop "Values in Computing" survey (150 responses worldwide) |
Start Year | 2016 |
Title | Clasp Prototypes |
Description | A 'family' of haptic technology prototypes for anxiety interaction capture and management, prototypes include - Snap, a costumisable digital wearable stretch-band that logs anxiety interactions by changing conductivity status - Clip, a costumisable digital wearable 'clip-on' clicker that records intentive anxious interactions - Click, an add-on mobile-phone button that records 'up' and 'down' mood states and memory cues through screenless interaction All the above physical prototypes are paired with a Digital Visualisation Platform that supports anxiety management and reflection |
Type Of Technology | Physical Model/Kit |
Year Produced | 2015 |
Impact | the above prototypes are the result of a co-development process that involved more than 300 people in the first 12 months of the project. A user study is planned for further evaluation this spring |
Title | SnAPP cloud data platform |
Description | SnAPP cloud has been designed to provide a web interface to data captured via SnAPP mobile. SnAPP cloud allows users to 'donate' their data to a choice (private or public) group. Data donations are anonyomus and can be annotated by the donor only. Data is displayed on a geographical map using open streetmap. |
Type Of Technology | Webtool/Application |
Year Produced | 2016 |
Impact | it has been used on a data walk capturing more than 180 data points and notations from 4 participants. it is currently piloted in tanzania to track displacement on urban slums caused by floods. A Dublin Smart Cycling Campaign winner of Enterpirse Ireland award was directly and aknowledging inspired by SnAPP. http://smartdublin.ie/cycling-challenge-phase-1-winners-announced/ |
Title | SnAPP mobile data platform |
Description | SnAPP is a mobile application designed to capture a person's mood through tactile interactions and has been designed to work across several devices. SnAPP is the latest of Clasp prototypes; it builds on previous Snap wearable co-development process with Autism Initiatives. It was co-developed and tested with 10 participants (Health professionals and an adult diagnosed with autism) over a three-month cycle |
Type Of Technology | Webtool/Application |
Year Produced | 2016 |
Impact | SnAPP was co-developed and tested with 10 participants (Health professionals and an adult diagnosed with autism) over a three-month cycle. feedback from the participants was extremely positive and encouraging. Report on feedback in academic publcations submitted to the ACM Pervasive Health conference and AAET european cogress on assistive technologies |
URL | http://myclasp.org/snapp-data-bookmarking-platform/ |
Description | Clasp Relay: Research Garden Design Process |
Form Of Engagement Activity | Participation in an activity, workshop or similar |
Part Of Official Scheme? | No |
Geographic Reach | Local |
Primary Audience | Postgraduate students |
Results and Impact | To mark the closure of the project and transfer lessons learned to the new team of PDRA moving into Clasp studio space, Team Clasp designed a 4-week redesign process of the studio sapce in partnership with the new team. 3D digital model of the space was produced and a physical model build to scale and used for discussiing space requirements of the new team in terms of group dynamics and apporach to research (e.g. Agile processes, need of space for stand up meetings, white boards and so forth). both teams considered thisexercise as a great success. Admin staff from our own department showcased the phyisical model during an student and staff open day event as an examplar on how other spaces in the department could be redesigned. |
Year(s) Of Engagement Activity | 2016 |
Description | Media Article |
Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Industry/Business |
Results and Impact | telephone interview for zdnet magazine resulted in article that was widely picked up by more than 20 online media |
Year(s) Of Engagement Activity | 2016 |
URL | http://www.zdnet.com/article/how-wearable-devices-are-helping-people-with-autism-manage-anxiety/ |
Description | SnAPP Data Platform: Digital Health Design Workshop |
Form Of Engagement Activity | Participation in an activity, workshop or similar |
Part Of Official Scheme? | No |
Geographic Reach | Regional |
Primary Audience | Professional Practitioners |
Results and Impact | A half-day facilitated future design workshop with NHS mental health professionals identifying future potential applications and adptations of SnAPP data platform in mental health. As a result more than 10 potential applications were identified and summarized in a highlight report. |
Year(s) Of Engagement Activity | 2016 |
URL | http://myclasp.org/?p=967 |
Description | SnAPP Data Platform: Future Design Workshop |
Form Of Engagement Activity | Participation in an activity, workshop or similar |
Part Of Official Scheme? | No |
Geographic Reach | Regional |
Primary Audience | Other audiences |
Results and Impact | A half-day facilitated workshop with an interdisciplionary representation of academic and research staff across campus (design, environemt, health, sociology, computing, data science) identifying future design potentials of SnAPP data platform in a variety of domains. As a result more than 10 potential applications have been identified and summarized in a highlight report |
Year(s) Of Engagement Activity | 2016 |
URL | http://myclasp.org/?p=967 |