‘Making’ Knowledge, ‘Making’ Impact

Lab4Living is a multidisciplinary research group within the Cultural, Communication and Computing Research Institute (C3RI), with a focus on bringing Design-led research to fields of health and wellbeing. Our work spans a range of health contexts across the entire life course, and is characterised by the use of creating and making. These effective, empowering approaches include those affected by the research outcomes in the knowledge creation process, as a route to greater impact. For a designer, the process of drawing or making something is not to transcribe ideas from their heads but as a means of orchestrating a conversation with themselves, and others [1]. Externalising those emergent thoughts, making them tangible, allows designers to extend their thinking, distributing it between conception and perception simultaneously [1]. When others are invited into this ‘conversation’, the materiality of drawings or prototypes makes it easier to share, communicate and develop knowledge in a common language, unbounded by barriers between disciplines or hierarchies. The process of making, either collaboratively or as an independent enquiry, elicits deeper forms of knowledge (for example tacit, behavioural or experiential). These can elevate research findings into meaningful, impactful outcomes that are sensitive to the ‘messy’ reality within which they hope to contribute. Clearly, many of the principles of ‘making’ knowledge resonate with the complex, interdependent nature of healthcare services and personal, hard to articulate nature of healthcare experiences. In our presentation, we will use several key case studies from the Lab4Living portfolio to illustrate our approaches and impact to date

‘I Felt Welcomed in Like They’re a Little Family in There, I Felt Like I Was Joining a Team or Something’: Vape Shop Customers’ Experiences of E-Cigarette Use, Vape Shops and the Vaping Community

Background: Specialist electronic cigarette (e-cigarette) shops, known as vape shops, provide access to a less harmful alternative to smoking. This study aimed to understand customers’ experiences of vaping and vape shops, and the extent to which smoking cessation advice is and should be provided in these shops. Methods: We conducted telephone interviews with 22 customers recruited in vapeshops in the East Midlands region of England. Interviews explored participants’ smoking histories, reasons for using e-cigarettes, the role of vape shops in their e-cigarette use, and whether smoking cessation was discussed in vape shops. Interviews were analysed following framework approach principles. Results: Most respondents regarded e-cigarettes as a quitting tool and reported very positive experiences of vaping. Vape shops were central to participants’ positive experiences, in that they provided access to a wide variety of high-quality products and reliable product information and advice. The shop staff engendered a sense of loyalty in customers which, together with the community of other vapers, created a network that helped to support e-cigarette use. Vape shops were not regarded as a setting in which cessation advice was generally provided but were acknowledged as potentially appropriate places to provide quitting support. Conclusions: Vape shops have the potential to play an important role in tobacco harm reduction, which could be increased if their service model were to extend to help smokers to quit

Co-designing resources for knowledge based self-reflection for people living with Parkinson’s disease to better enable independent living [abstract only]

Summary Parkinson’s disease (PD) is a complex progressive neurodegenerative disease. Individuals experience PD in a variety of ways, leading to difficulty in diagnosis, acceptance and on-going management. Service provision is complex, with provider variation, often lacking ‘joined up’ provision between acute hospital and community care. This project utilised a co-design methodology to identify patient and provider needs for PD services in the Plymouth NHS Trust and develop tools, resources and service structures to meet these needs. The application of co-design in healthcare settings is fraught by challenges of power dynamics between healthcare professionals and ‘patients’. We were mindful of this throughout our process. Further, the tools and resources were intended to facilitate independent living for people with PD, yet importantly, enable them to do so from an informed position. This resulted in resources facilitating both the mobilisation of complex knowledge and self-reflection. Method Participants included: People living with Parkinson’s and their families and carers, Parkinson’s Specialist Nurses, Community care teams, Therapy Specialists, Consultant Neurologists, Finance officer, Parkinson’s Charity representatives and health services researchers from Plymouth and Exeter Universities. The co-design process was structured around five co-design workshops. 1. Initiating the collaboration: Lego Serious Play 2. Understanding the Service: Service Journey Mapping, Personas, Disease Trajectory Models, Ideal Service Maps 3. Ideas, Development, Prioritisation and Prototyping: Ideation Games, Mock-ups, Body Storming, Role Plays, Prioritisation 4. Design ‘Hack’: Prototyping 5. Presentation of prototypes, testing and planning Prior to, between and after each workshop, design studio activities were: 1. Planning and preparation 2. Data recording and analysis: interrogating the data as designers 3. Reflection: reflecting on the data and workshop as design researchers 4. Making: making resources, data collection tools and prototypes 5. Communication: ongoing communication with participants Results Five concepts developed were: a Parkinson’s Patient passport, New service and local information; a media campaign; a card deck to support self-reflection; a self-management support and general information package. Of these, the media campaign was paused awaiting national charity support. The other four concepts became the Home-based care pathway through a process of four further co-design workshops. They are being trialled with 150 patients in the South West region. Discussion Within healthcare, one of the biggest challenges is getting new ideas into practice (Greenhalgh and Wieringa, 2011). Coproduction is offered as a possible mechanism for addressing issues that cause this (Greenhalgh et al, 2016). However, the predominant epistemology in health services research devalues the voices of professionals and patients. It is questionable whether ‘real’ coproduction can happen whilst such hierarchies of evidence exist (Rose & Kalathil, 2019). We have suggested that the creative practices of design (Langley et al, 2018) used within co-design processes reduce or even remove these hierarchies, enabling effective embodiment (within prototypes) of experiential knowledge of professionals and patients and the latest scientific research knowledge. Since outputs of co-design processes embody these different forms of knowledge (Rycroft-Malone et al., 2004), they become easier to implement; reducing the translation gap. Framing design and co-design in this way (as a knowledge creation and mobilization process) has been effective for the authors, enabling them to work easily with healthcare professionals and health services researchers. It is a ‘lens’ they understand and appreciate the value of. We encourage other designers working in this space to consider framing their work in this way. Designers using co-design are also encouraged to consider their process in this way; as one of eliciting and embodying experiential knowledge of users, and service providers along with contextual knowledge and the latest research evidence from the relevant field. This can support ‘evidence-informed’ design outputs without stifling creativity and imagination

Participatory healthcare innovation

Invited worksho