AffecTech workshop with UK’s NHS in collaboration with the Royal Institute of Technology (KTH), Sweden
A special AffecTech outreach event involving patient ambassadors, explored innovative Soma wearables technologies. The AffecTech Patient and Public Engagement Event was presented by AffecTech researcher Charles Windlin of KTH University and Professor Heather Iles-Smith, Leeds Teaching Hospitals NHS Trust.
The aim of this event was to discuss and provide feedback on the exciting innovation of “Soma Bits” and whether these can be used to help those suffering from depression or anxiety. Soma Bits, a set of interactive devices acting a bit like Lego, can be touched, manipulated, moved around and combined to create interesting experiences. They create heat, vibrations and can change shape when applied to the body, in a similar way to balloons. They can sense heartbeats or breathing patterns. When combined, a breathing rhythm can, for example, be mirrored into a soft vibration pattern on the chest to help its user calm down and breathe more slowly.
Charles, during his secondment at the NHS Research and Innovation Centre in Leeds, as part of his role as AffecTech researcher, presented current work on a participatory workshop format to a group of patient ambassadors. Charles below, explains the design workshop format entailed a series of events that invited participants with past experience in depression with anxiety as comorbidity. The participants were accompanied by a significant other, or guardian to support them.
Thoughts and reflections from AffecTech researcher Charles Windlin on the event:
Throughout the events the participants were asked to sensitise their bodily awareness and later on locate and define their somatic responses they had in their past experience of depression and/or anxiety together with their guardian which will help their protégé during the design process. The question is if it is possible to associate the responses with the emotions that occur at as a result.
With these insights, a design process will support the participants to create interactive artefacts, based on the soma bits, to either express those emotions, act as an antidote or as sensitiser for becoming attune to the experienced emotions and being able to observe, judge and manage it.
The above described workshop format was presented in Leeds to a group of patient ambassadors during a public and patient involvement event (PPI). PPI are an important instrument not only for the research but also for policy makers to understand real needs, insights, concerns, new ideas from real sufferers in an everyday context. It acts as a presentation platform to the public to get informed about current research endeavours and provide feedback about its feasibility, necessity but also to provide support and allow collaborating. PPIs are a crucial dialogue between the public and the researchers that makes sure important needs and ideas are taken in considerations and we don’t research in a constructed reality.
The group of patient ambassadors that I met provided insightful and invaluable feedback which would be hard to acquire in any other way. Personal stories and experiences around mental health and care were shared like how important the personal view of the patient on their body and the residing emotions are as well how important it is to be able to express emotions to somebody else that cares for them. Main points addressed the importance of the location and how to accommodate the participants. Additionally, the soma bits were also made available to the participants for testing and exploring which immediately triggered ideation around potential applications, usage scenarios and possible experiences that could be created with it, for example a distractor from perceived palpitations.
Very important is the notion of “we are in this together” that emphasises this workshop format. Mental ill-health is not managed by oneself but with others that care, provide support and a different point of view on reality verbally and non-verbally. It was also pointed out how important the body is that carries the mind and that bodily awareness is key to understanding ones emotions and how this can inform one’s thought processes.
An important aspect is the exclusion by technology. If I intend to use interactive technology in this workshop format and if this workshop yields results that might be of use to somebody how can I make sure that the availability to ensure to the public especially patients that may not be able to afford such technology? How will I address tech phobia?
A possible direction that occurred from the observation during the PPI was that male participants are less expressive when it comes to their emotions and its display. The male ambassadors were emphasising how important technology became and also showed how expressive they could be through technology.
This raises questions like:
• How does technology enable male participants to express emotions?
• Could they express and attend emotions without the help of technology over time?
The AffecTech Project
The AffecTech project is an international collaborative network that advances personal health technologies for affective disorders – depression, anxiety and bipolar, and aims to deliver an effective low cost technology platform to help sufferers. AffecTech was established with support from the European Commission’s research and innovation agency, Horizon 2020 via the Marie Sklodowska-Curie Innovative Training Networks.
Images above are from an earlier KTH AffecTech Soma training workshop.
The AffecTech Patient and public engagement event was presented in Leeds, UK on 5th September 2019.