This work is an exploration into how to engage participants meaningfully through remote co-design during the COVID-19 pandemic.
Partners: Sheffield Hallam University, University of South Australia, University of York
Project team: Joe Langley, Niki Wallace, Aaron Davies, Ian Gwilt, Sarah Knowles, Rebecca Partridge, Gemma Wheeler, Ursula Ankeny
Co-design as a practice enables people to come together on an equal footing to shape a product or service that they will ultimately be affected by, with the principles of co-design ensuring their agency and voice are retained and empowered throughout the process. Prior to COVID-19, our preferred method of engagement was face-to-face workshops, as we found this type of setting enabled strong engagement, equalized power dynamics during those events and sustained continued involvement across a series of events.
During COVID-19, this approach was not possible, prompting us to explore a variety of other methods, both digital and analogue, to deliver more remote versions of co-design.
Initially, when ‘in person’ activities such as workshops ceased to be possible, there was a drive to try and replicate a face-to-face workshop through a digital platform such as Zoom, often augmented by other digital collaboration platforms such as MIRO. But these early experiences highlighted some questions and problems such as:
Who had access?
Who had skills and capabilities?
Who was excluded?
How are relationships built and sustained through digital media?
How can we maintain engagement?
How can we stimulate creative sharing and building on each other’s ideas?
How can we ensure equal power dynamics between different participants?
How can we get past digital fatigue?
This began a series of experiments looking at various ways of supporting people to engage in co-design. Co-design is a continuous process. Yet our pre-COVID practice had been to constrain the input from co-design partners to these time-locked windows of opportunity. Our early COVID efforts replicated this through digital media. An important feature of our efforts to challenge this began to explore opening up options for more sustained, even continuous input throughout a co-design process, challenging notions of where, when and how people can contribute to these processes. This is a legacy we hope to continue when we are able to safely meet face-to-face.
The project links below show our response to these issues on a variety of different projects, undertaken by Lab4Living and our collaborators at UniSA.
Active Withernesea Supporting the residents of Withernsea to be more active whatever their physical ability using existing/natural resources in the neighbourhood.
‘global’ mail drop to every household in defined area Interactive Zines Social media Radio Email
ADHD resource (in the form of a children’s magazine) with and for children with ADHD.
Activity books Online 1-2-1 video workshops
(Re)building Stories of Harm in the NHS Exploring how patients and families can be meaningfully involved (beyond their role as a ‘witness’ or source of evidence) in Serious Incident Investigations and developing resources to support their involvement in future investigations.
Home Based Care Pathway Developing resources to help people with Parkinson’s self- manage more effectively and confidently. These resources support a new pathway using remote monitoring technology to assist in condition management.
UTI Developing a device to quickly diagnose Urinary Tract Infections in primary care to ensure speedy treatment where necessary and reduce inappropriate antibiotic use. Specific work involves understanding how this device will be used in primary care settings and the related requirements from stakeholder perspectives.
JIA Toolbox Developing therapeutic interventions to help children with arthritis lead more active and independent lives. Exploring the needs from different stakeholder perspectives and combining these to create a toolbox of interventions.
FDIWhole Mouth Health Investigating the perceptions of ‘whole of mouth health’ with international stakeholders and participant groups from Australia, Chile, Nigeria, Switzerland and the United Kingdom.
Workbooks, socially distanced face-to-face
University of South Australia (UniSA)
Downsizing: Exploring the experience of people aged 65+ moving from a suburban home to an inner-city apartment.
Food Futures: Using a gamified co-research process to discover the food system to help community members to see the system, build their adaptive capacity and explore what the future of food in their region might be.
Workshop in a box (pass-the-parcel model) Virtual face-to-face games Miro Google docs
FDI: Investigating the perceptions of ‘whole of mouth health’ with international stakeholders and participant groups.
Workbooks Socially distanced face-to-face
NOVELL Redesign: Engaging nationally with stroke survivors, neuroscience researchers, rehabilitation professionals, designers and health administrators to rethink the design of in-patient rehabilitation environments
CSIRO: Engaging with people in regional and remote communities as well as urban communities who had been recently diagnosed with Pre-Diabetes or Type 2 Diabetes to co-design interventions to manage and/or reverse the course of Type 2 Diabetes
We have published some of our emergent thinking as we explored different ways of considering the ways that people are enabled to engage in co-design and specifically in socially distant co-design – and the impact this has on them, us and the design. Further information on our use of remote co-design during COVID-19 is how through the following publications:
Davis, A, Wallace, N, Langley, J & Gwilt, I 2021, ‘Low-Contact Do-Design: Considering more flexible spatiotemporal models for the co-design workshop’, Strategic Design Research Journal, 13(4), in press
Langley, J., Wallace, N., Davis, A., Gwilt, I., Knowles, S., Partridge, R., Wheeler, G., Ankeny, U., (2021) “COVID co-design does not *HAVE* to be digital! Why “which platform should we use?” should not be your first question” Chapter in ‘COVID-19 and Co-production in Health and Social Care Research, Policy and Practice’, Edited by Williams, O. et al, Policy Press, In press
This enquiry examines the role of design and creative practice in giving voice to older people facing extreme poverty in Sheffield.
Funded by: Research England
Project lead: Claire Craig, Sarah Smith (Smizz), Helen Fisher
Despite the long-term trends of improvement in life expectancy, infant mortality and rates of premature deaths from cancer and cardiovascular disease in England as a whole, stark inequalities in health remain (Public Health England, 2019).
According to research undertaken by the Kings Fund ‘long term conditions are 60% higher in people experiencing poverty (DH, 2012). Studies have suggested that the severity of the disease is 30% greater for this population and that multi-morbidity is more prevalent particularly in relation to individuals living with mental health problems. For premature cardiovascular disease mortality considerable inequality by deprivation exists with mortality rates in the most deprived tenth of areas of the UK almost 3.5 times higher than those in the least deprived tenth of areas.
Design has an important role to play in challenging and addressing these inequalities. In 1972 Papanek and Fuller argued that design is imperative to satisfy unmet or underserved needs of marginalised people living in resource limited societies. More recently there has been a diversification of how and where designers are working with greater emphasis on civic responsibility and the value of social design.
Researchers in Lab4Living engage in a wide-ranging programme of work addressing health inequalities. This current study utilizes a design-led approach to make visible some of the challenges older people living in poverty in Sheffield face. This two year project was undertaken in partnership with REACH as part of the national AgeBetter programme. Inspired by the Life Café (a curated set of materials to enable individuals to have challenging conversations about sensitive topics of end of life), the project lead commissioned the development of a toolkit to support conversations about finances. This was found to be successful and has now been adopted by Age Better in a national roll out of the work.The research culminated in an interactive exhibition where participants were able to share their experiences of social isolation, loneliness and financial hardship. The work has contributed to broader debates regarding he need to create services that are more in-tune with the complex and multiple barriers people living in poverty face.
An enquiry building on previous work funded by Marie Curie exploring the role of design in rethinking how we experience end of life, death and bereavement.
Funded by: Research England
Project lead: Helen Fisher, Claire Craig
The UK is undergoing a huge demographic shift. On average people are now living much longer and this trend is set to continue: by 2037 the number of people aged 65 and over will rise from 11.6 million today to 17.8 million. While this is a triumph of modern medicine and living standards, it will actually translate into more, increasingly frail, older people, with multiple health issues, who will need more care towards the end of their lives. More people will need personalised and tailored care in the future and most of this care will take place in the community, in people’s own homes and care homes, rather than in hospitals. Within the context of the 100 year life, a consideration of the role of design at end of life is important. Death is a key part of life and of the 100 year life.
This enquiry builds on the 2 year Marie Curie funded research project Design to Care. Claire Craig is working with the Michele Angelo Petrone to explore ways of supporting individuals diagnosed with life-limiting and terminal illness. Helen Fisher is working with the FLOW Academy (led by Sheffield Teaching Hospitals with representation from key organisations across the city including the Carers Centre, Age UK, Sheffield Alliance, MIND and other 3rd sector orgnisations) to explore the potential of design-led interventions in the context of carers and family members.
This enquiry explores the role of design in reimagining the future care home. It focuses particularly on the role of design in the creation of research informed products to promote meaningful engagement between residents in the home, their families and care staff.
Funded by: Research England
Project lead: Claire Craig, Helen Fisher, Tom Maisey
Partners: Kathryn Rawling, Sheff Care
Older people living in care homes have some of the most complex needs of society (BGS 2016). Whilst there is a high level of consensus that participation in meaningful activity leads to increased quality of life for older people (Han et al 2016, Wenborn et al. 2013) repeated studies have highlighted the limited opportunities older people living in care homes currently face when accessing this provision. Mozely’s study, for instance, identified in her study of 100 homes that 80% of the homes provided less than 6 minutes of activity per resident per day. A similar picture was presented in Hancock’s research (2006).
In response to this unmet need design researchers in Lab4Living have been investigating the development of ludic artfacts to support the wellbeing of older people (Craig, 2014, Craig, Chamberlain and Fisher, 2018; Fisher, Craig and Chamberlain, 2019 and Maisey and Craig 2016). To date, residents from over 10 care homes in Sheffield have participated in the study and a number of research informed products have been created. These are currently being evaluated.
The research raises questions about meaning and value in the context of the care home and the potential to re-imagine this space and the interactions that occur there.
Being part of this project has been an extraordinary and wonderful experience, you are transforming the lives of individuals I work alongside
A design artefact that explores concepts of ongoingness in the context of dementia. The piece explores the relationship between a granddaughter and her grandparents through capturing and curating digital media now for the future, offering ways for her to feel a sense of her grandparents in particular places.
Project lead: Helen Fisher
Funded by: Research England
Partners: Northumbria University (Lead) / Newcastle University / BBC / Marie Curie / CRUSE Bereavement / National Council for Palliative Care
Trails is a tiny audio artefact that invites the listener to discover stories captured and curated by loved ones with dementia when visiting places that are meaningful for the person and their family. The artefact is one design response generated as part of the EPSRC project, Enabling Ongoingness which explores the role of design in creating meaningful connections with people who have passed away or who are at end of life.
A new project can feel like stepping into the unknown—new people, new perspectives, and not everyone on the same page. Initiate.Collaborate is a card game that is fun and enables responsive and responsible collaborations.
Project team: Claire Craig, Helen Fisher
Funded by: Royal Society, New Zealand
Partners: Auckland University of Technology (AUT), New Zealand
The academic disciplines and practices of design and health currently operate within different spaces and draw on disparate paradigms relating to how knowledge is created and disseminated. Whilst the value of bringing design and health together is increasingly being recognised the reality is that this can be fraught with complexity.
This research sought to develop methods and materials to facilitate inter-disciplinary collaborations. The final output of the research is a game named Initiate.Collaborate which enables research teams comprising of design and health researchers to explore underlying value systems and assumptions that potentially impact on how they might work together.
Patient experience is a highly contested concept. However there is emerging evidence and near universal agreement that Patient Experience (PE) feedback is necessary in order to deliver high quality care. In the UK, there is a mandatory requirement to capture patient experience data. This project aimed to explore staff attitudes towards and understanding of patient experience data, and what (if anything) they did with it.
Funded by NIHR HS&DR
Partners: Bradford Institute of Health Research NIHR CLAHRC YH
Project Team: Design Lead – Joe Langley Rebecca Partridge, Ian Gwilt, Rebecca Lawton, Laura Sheard, Claire Marsh
An initial scoping review was conducted in stage 1 to understand what Patient Experience (PE) measures are currently collected, collated, and used to inform service improvement and care delivery.
Stage 2 was a phase of action research and co-design iteratively combined. This was followed by an evaluation and a refinement of the intervention developed in stage 2 for scale up to the wider NHS context.
Our specific contribution focused on the co-design in stage 2.
A patient experience improvement toolkit was developed through three workshops using participative co-design methods. Representatives from six wards from three NHS Trusts and a group of six patient/public representatives volunteered to take part in the three workshops. Members of the research team (who did the initial scoping research) also participated in the co-design.
The initial prototype was piloted for a 12 month period through an embedded action researcher process. The action researchers then engaged in a subsequent design consultancy process to refine and modify the toolkit.
A toolkit was developed to support frontline staff to access, collect, analyse, interpret and use patient experience data to identify ward level changes prototypes and sustain them.
It was identified that the data interpretation skills did not typically exist in the ward and so the toolkit was modified to accommodate a data skilled person as a toolkit facilitator. This individual took on many of the characteristics of the action researchers – primarily because the action researchers took up this role in order to keep the project moving forwards.
What was interesting from a co-design and design research perspective was the presence of the action researchers in the extended prototype testing phase and the mediating role that the action researchers took on after this, acting as an intermediary and gatekeeper between the design team and the frontline staff who had tested the toolkit.
This raised interesting questions for us about how to access the right knowledge (from the frontline staff) ‘remotely’ and how to design ‘around’ the action researchers – in our minds was a constant query about the influence the action researchers played in the process and became part of the intervention itself.
Higher order reflections about design researchers working with health sciences researchers and the integration of methods from design research and health sciences were also raised.
The toolkit has since been further refined into the Yorkshire Patient Experience Toolkit (YPET). A coaches network has been established to support ward staff to use the toolkit, and is available as a free resource.
The term ‘social transformation through occupation’ is used broadly to refer to various approaches that focus on using occupation as a means to restructure practices, systems and structures, so as to ameliorate occupational and social inequities.
Project team: Claire Craig / Nicholas Pollard
Funded by: European Network of Occupational Therapists in Higher Education
The social transformation through occupation think-tank has brought together a global multi-sectorial group, which includes professionals, service users, researchers, politicians, members of the public, students and teachers. The enquiry explores how communities draw on collective creativity to come together and build assets to support quality of life.
Members of the think-tank and its associated network which spans over 30 countries, have been gathering information and creating pathways towards actions to tackle health inequalities through an occupation based perspective. The research team focuses on ways to bring together diverse theoretical perspectives and practices to move social transformation through occupation forward.
Early research has been manifested in an e-book of Case Studies for Social Transformation through Occupation. The e-book shares exemplar case studies generated throughout the research, providing ideas for how such case studies can be used in education and practice.
Analysis of these case studies identified that participants were drawing upon key principles and practices associated with broader models of social transformations, particularly those associated with participatory, emancipatory and community development approaches. Aligned with these types of approaches, participants emphasized the need to:
Span a continuum from individual lives to political systems
Incorporate critical examination of power and positionality
Engage critical theoretical frameworks
Build collaborative partnerships across diverse groups
Thank you for your work and inspiration on this important topic. Congratulations for this fantastic product. I could see this resource being useful for introducing occupation to students in other disciplines. I would like to use the cases as exemplars for my students’ projects in health entrepreneurship.
Ethics are moral principles that govern the choices individuals make. They seek to resolve questions of human morality by defining concepts such as good and evil, right and wrong, virtue and vice.
Project team: Claire Craig, Helen Fisher
Funded by: EPSRC
Partners: Northumbria University (Lead) / Newcastle University / BBC / Marie Curie / CRUSE Bereavement / National Council for Palliative Care
Within the broader research context each discipline subscribes to its own ethical code. These are often manifested in frameworks, which set out expectations and behaviours that teams engaging in research are required to follow.
As the potential of design to address societal issues and questions becomes increasingly recognized a growing number of design researchers are working in fields related to sensitive areas including research with people with dementia, research in care homes and in end of life care. Some researchers may be under-equipped to manage such complexities, which may place participants, stakeholders and researchers alike at risk in a variety of ways. These situations also necessitate engaging with frameworks and systems of governance that designers may be unfamiliar with e.g. those developed by health-care research.
This enquiry focused on the development of an ethical roadmap to support the discussion and enactment of ethical practices in design research.
Academic disciplines operate within publicly defined ethical parameters created to support researchers through complex dilemmas. However, paradigms in interdisciplinary research, a growing focus on emancipatory and participatory methods and questions relating to an ethic of technology call for a rethinking of existing frameworks which are largely predicated on bioethics.
This enquiry focused on the development of an ethical roadmap to support the discussion and enactment of ethical practices in design research. The resultant research-informed roadmap guides design research teams in navigating and understanding the broader ethical and moral decisions that research inevitably entails.
This project takes a user-centred approach through needs assessment, co-design, interviews, case studies and usability testing to design and develop a product range to help children with arthritis lead more active and independent lives.
Funded by Sheffield Hallam University, Lab4Living, NIHR CYP-MedTech and Sheffield Children’s Hospital
SHU supervisors: Dr Joe Langley and Nick Dulake External supervisors: Nathaniel Mills (NIHR CYP-MedTech) and Dan Hawley (Sheffield Children’s Hospital NHS Foundation Trust)
The problem Juvenile Idiopathic Arthritis (JIA) is one of the most common causes of physical disability in childhood (National Rheumatoid Arthritis Society, 2018) with between 1,000 and 1,500 children developing it each year in the UK (Silman & Hocheberg, 2002). Despite the commonality of the issue, arthritis in children is often trivialised with many products targeted towards older users highlighting an ignored cohort and the potential for new products.
The approach This research uses co-design, interviews, surveys through support groups, case studies, sketching, form modelling and prototyping to explore technologies and products to support children with arthritis and their families to enable them to live more active and independent lives. Participatory research methods involving children, families and clinicians has led to a range of prototypes being developed.
Paediatric conditions were focused on as children have an entirely different outlook on the world from adults (Cherry, 2018). For younger children, they often have an innate confidence in themselves, unconcerned about how things they do are perceived whilst their creativity is boundless as their imaginations aren’t curbed by rules of logic (Frost, 2016). As a result, this makes them an ideal target market due to their adaptability. For older children, whilst they are more concerned with their appearance and how their actions are perceived, their key driver is increasing their independence and exploring their world, which diseases like arthritis can limit. By encouraging certain behaviours such as self-management of a condition from a young age, it gets them adapted and into the routine. In adulthood then, these early experiences will give them confidence in managing their condition allowing them to live independent lives and reduce potential ‘crisis’ scenarios.
JIA was chosen as the condition as it is not an uncommon problem yet it is treated as such, with many children feeling stigmatised and isolated. The fact that it is a ‘hidden disease’ can lead to much disbelief with an often long wait to diagnosis- “I was in a lot of pain and started to get bullied as I was different” according to one child participant. With the formation of a new charity called Versus Arthritis in September 2018 following the merger of Arthritis Care and Arthritis Research UK, there was a refreshed campaign for recognition as the condition “steals from millions of people every day” (Versus Arthritis, 2018), the currency of the issue and the extent of the ignored cohort was emphasised, leading to the decision to focus on this area.
Users were at the heart of this project with initial research looking into the needs of the different stakeholders involved: the child, the parent/ carer, the healthcare professional and the teacher. Through this, it became clear how varied the key priorities were within the group:
The child wanted “something to help with pain so that [they wouldn’t] have to stop doing fun things”.
The parent/ carer, in addition to aids to distract from pain, also wanted something to help keep better track of the condition.
The healthcare professional wanted something to help motivate physiotherapy.
The teacher needed something to help with disbelief in the classroom.
Initial thoughts about briefs had centred on improving assessment, helping with everyday activities and reducing stigma. The priorities put forward by the stakeholders slightly altered the direction, driving the decision to develop four interventions simultaneously, with each targeting a key need put forward by each group:
Helping with pain management
A way to keep track more easily
Help with communication in the classroom
Through the duration of the six month timeframe, each brief was developed by Ursula to prototype level. Workshops with children who have arthritis and their families were held at the research, initial design, further development and final prototype stage in order to ensure the products were fulfilling a need as well as to tease out issues and potential improvements. Technical requirements were tested and tweaked to ensure both ease of use and safety whilst the forms were explored through physical models and sketching, taking into account both ergonomic factors of gripping difficulty and aesthetic drivers of wanting something discreet but that also validated their condition.
Outcomes Four prototypes were developed as part of the final year project:
Heat- FIX: A wearable device that helps to distract the brain from the joint pain during a flare. It can be wrapped around any joint and fastened securely in place.
“The warmth of it is really soothing- I love the degree of control.”
(child participant with arthritis)
Active- FLEX: A motivational physio tool that has an additional link to a character on the app helping to gamify and incentivise an otherwise “boring” chore. The colours are bright and energising with the gripping texture ensuring ease of use.
“I hate nagging her to do her stretches- this way she’d want to do them.”
(parent workshop participant)
Class- COMM: A wearable to help facilitate communication between the pupil and teacher when the child is in pain/ needs help. With a form similar to a Fitbit, the wearable is discreet, helping to reduce feelings of embarassment.
“Teachers have forced her to do PE as they weren’t aware – this would help with disbelief.”
JA- CONNECT: An app with different versions for parents and children to both help keep better track of the condition as well as to create a network so that parents and children don’t feel so isolated in their experience.
“The first thing that clinicians ask when I mention a symptom is ‘do you have a photo?’. This would really help in tracking changes.”
“Being able to pass tips onto other kids would be so great.”
“The University, though the Lab4Living research group, already have a strong relationship with both Sheffield Children’s Hospital and NIHR CYP-MedTech, collaborating on a range of projects with both. This enabled Ursula to benefit from research input to her undergraduate work at organisational, operational and technical levels of her project. Subsequently, following graduation, Lab4Living has provided a ready route to enable Ursula to continue her project through to implementation.
(Dr Joe Langley, Lab4Living)
The future This project has been awarded funding from NIHR CYP MedTech through Sheffield Children’s Hospital, to further develop the product outcomes, which started in October 2019. The development will focus on improving the technology whilst also looking at the connectivity aspect of the products with the app platform. The first goal is to carry out a pilot study, the results of which can then drive further improvements, with the hope being that these products will ultimately go to market.