Enabling Ongoingness: Content Creation & Consumption in the New Digital Age

Lead Research Organisation: Northumbria University
Department Name: Fac of Arts, Design and Social Sciences

Abstract

The 'oldest old' are the fastest growing age group in the UK and a grand societal challenge we face is that the nature of growing older and end of life is changing. There are distinct challenges that are pushing some existing systems to breaking point (e.g. there is an increasing demand for care, but there are reductions in resources available to support the older old and worryingly a reduction in people using local authority care services which is suggestive of exclusion). We position this research within the fourth age; a period of life clinically characterised by physical and cognitive frailty and decline towards death. People in this period of life are seldom included in research, but have a unique voice around critical societal challenges and could be sensitively and meaningfully included into research in order to give them a voice in the reimagining of digital media to support sense of self for the older old. Further this research will engage with carers and those bereaved to investigate how new media could support people's relationships and sense of self not only at end of life but also in bereavement.
We are living in a new digital age, each gathering a digital trail of media and personal data as we live: photographs, videos, blog posts, forum comments, Facebook conversations, tweets, music preferences etc. Whether these are created by us or by others about us there is a vast and rich wealth of digital media that could be leveraged and reappropriated to reflect positive things back to us in new ways - about ourselves and our connectedness with others. The concept of ongoingness is something we see as valuable for the development of new tools and systems for the configuration of metadata in new ways. Ongoingness suggests that all stages of our lives are connected and continuing, which gives us ways to think about what digital media creation and consumption practices could be that draw on the repository of media connected to us in challenging contexts. It also gives us the ability to consider how digital technologies could be developed in acknowledgement that people need to maintain a form of connectedness to a dead loved one in bereavement. Beyond memorialisation people benefit from practices that nurture an ongoing (albeit different) relationship with the deceased after a loved one has died. To date there is a lack of research considering technology for these contexts and what we can't do currently is curate this vast resource of media to specifically support sense of self, help people deal with their own approaching end of life, nor help others deal with bereavement of a loved one through using these digital assets in purposeful ways.
Through links via our partners from Alzheimer's Society, Cruse, NCPC, HospiceUK, Dementia Positive, Marie Curie and Dementia Care we will work with older old people, carers and the bereaved using a research through design methodology to gently use acts of making and reflecting through objects to firstly develop new ways of using our metadata, secondly develop and deploy Internet of Things high fidelity prototypes that enable creation and curation of this digital media in new ways and thirdly develop new visions of consumption that foreground ongoingness. To give an example of what this could mean in the context of anticipating death - through their lives Betty and Derrick always used to jokingly argue with each other as to which song was better The Beatles 'Blackbird' or 'Dear Prudence'. Derrick curates their media so that after his death when Betty selects 'Blackbird', the song 'Dear Prudence' will always be played straight afterwards because he knows that it will make Betty smile. The couple loved gardening, now every May Betty unfolds her e-paper and a compilation of podcasts featuring specific flowers from the current year's Chelsea Flower Show are sent to Betty and a matching bouquet is delivered to her with anecdotes from Derrick's blog of how he grew some of these plants.

Planned Impact

The design methods for engagement, new media tools for creation, curation and consumption of content and IoT designs and deployments will all benefit those working in health and care who acknowledge the potential of the digital to support self at end of life, in dementia and in bereavement, but for whom this reality is not yet realised. We will engage with these sectors via our project partners, who are all leading advocates for new avenues to care and supporting resilience. The Director of the National Institute for Health Research, CLAHRC SY, and the theme lead for telehealth and telecare for the CLAHRC across the region is our project partner and has international networks with research, industry and practice through which our work will be disseminated. Our third sector partner organizations will tailor and communicate the findings in a form that is most appropriate to the multiple audiences who will utilize these. CRUSE, Hospice UK, NCPC, Dementia Action Alliance, Marie Curie, Alzheimer's Society, and Dementia Positive have committed to promote the work nationally and internationally utilizing their networks and mechanisms for dissemination ensuring benefit can be gained by professional care organisations, training strands within their networks, lay members of their organisations and clients. Further for staff of these organisations, this research will provide a set of innovative tools to conceptualise and carry out new forms of therapeutic interventions. These features will support reflective practice, as well as offer new opportunities for conducting training and holding difficult conversations with people facing the end of their lives, which will likely mean a refocusing on ongoingness.
We have a strong tradition of anchoring research in local communities, and given Newcastle University's commitment to civics, this project will engage with wider communities via existing regular public engagement events. We see local communities benefiting from the research process itself almost immediately through these channels. The research team are also active across a number of international networks including the European Network of Living Labs, the European Network of Occupational Therapists in Higher Education the European Academy of Design and the Med Design Group, a collaboration between health and design researchers in America, Germany, the UK and Italy, which offer an opportunity for ensuring that the research is fully disseminated and that learnings are utilised in practice.
Konwledge will also be disseminated through cultural pathways, enabling us to impact upon an even broader audience. Exhibits, films and design artefacts will be judiciously presented at major UK galleries and showcases via our strong existing collaborations with Victoria & Albert Museum, London Design Festival, Mozfest (Mozilla annual showcase in London), Discovery Museum (Newcastle), Lyceum (Sheffield). All exhibits will also be usable by each of our partner organisations within their public facing spaces/activities and we will dedicate an area to the project website as a gallery to digitally display all creative outcomes from the project in forms that will be opensource.
The positioning of this research within intersections of social science, experience-centred design, and IoT, means that significant technological innovation and situational development of IoT technologies will be a fundamental output of the project and benefit to industry (including our collaborators at Mozilla, Microsoft and Philips) and members of the health care sector. The development of our ethical framework and the visual method of working with participants are also significant outputs which are not only academic, but have a series of ramifications across care and design practice.

Publications

10 25 50
 
Title Blueprints 
Description Blueprints artefacts and method was exhibited in Australia at Monash University as part of the international Health Collaboration Symposium December 2018. The Health Collab Symposium and Workshops aimed to bring together Design for Health researchers in the Asia Pacific region and beyond to build collegiality and opportunities for research collaboration. 
Type Of Art Artistic/Creative Exhibition 
Year Produced 2018 
Impact The exhibition had international reach. 
 
Title Ethical Roadmap 
Description The Ethical Roadmap is a collection of resources for use by design researchers when embarking on research with people. There are 7 components which enable people to work together to think through ethical opportunities for projects such as ours - where design researchers seek to work with people in a co-creative manner. We are working in the contexts of dementia, end of life and bereavement, but the ethical roadmap is for any context and is customisable. 
Type Of Art Artefact (including digital) 
Year Produced 2018 
Impact We are currently writing up this work and plan to make it both a product and also an open source digital resource. We have to date used it in workshops with design researchers and also partner organisations to the ongoingness project. 
URL https://ongoingness.cargocollective.com/
 
Description The key findings of this research will come later in the project, but as interim findings we have some key reflections to share.

Firstly there is an increased complexity around working with the voluntary sector due to political and economic shifts. The voluntary sector plays a hugely important role to this project and research of this kind and there is necessity for an awareness of how much change to organisational structure and vision is occurring in this sector in the UK currently as this affects ways of engaging and accessibility.

Secondly in working with people at very different levels of vulnerability a significant finding is the value of the visual, tangibility, making and artefacts within the research through design process to support people to understand the nuanced and multi-layered elements of the questions the research is asking them and to be able to respond to them in their own ways. There is a need to foreground these elements of the process (rather than the outputs) as they enable the difficult conversations about mortality and end of life to be had.

Thirdly - The Ethical Roadmap physically embodies a key finding resulting from engagement with experts across a number of fields and the understanding of existing ethical processes, literature, philosophy and practice. The Roadmap draws together current thinking and relates this to how design researchers conduct co-creative engagements with people. The various components of the Roadmap give researchers the means to think through ethical opportunities for projects and how to align themselves as a research team to certain values and ways of working.
Exploitation Route -
Sectors Creative Economy,Digital/Communication/Information Technologies (including Software),Healthcare,Culture, Heritage, Museums and Collections,Other

 
Description Cruse Bereavement Care and Ongoingness 
Organisation Cruse Bereavement Care
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution I volunteer for 2 hours, one evening a each week (since the start of the project in 2017) with the Tyneside branch of the charity and have also redesigned the Tyneside branch of Cruse's Referral Secretary Books used to document first contact with new clients for counselling.
Collaborator Contribution Sue Clarke (Area Coordinator) Tyneside branch of Cruse Bereavement Care has met with me on several occassions to act as a critical friend to the project. She has reviewed the ethical roadmap tool that we have been developing and our initial design ideas. She has supported us in finding participants to work with.
Impact Peer support and recruitment of participants for the research fieldwork.
Start Year 2017
 
Description Dementia Lab 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact The third International Dementia Lab Event, held in Newcastle upon Tyne, UK, between the 30th and 31st of August 2018. Since starting in 2016, the Dementia Lab Event has become an important venue that brings together researchers, professionals and people with personal experience of dementia to share stories and learning on issues related to design and dementia. For Dementia Lab Event 2018, as well as broadly exploring the role of design and the creative arts in relation to dementia, we are specifically focusing on issues of experience and participation.
Year(s) Of Engagement Activity 2018
 
Description Diversifying Death - Shaping Perceptions for the 21st Century. Panel at University of Greenwich, London. 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Expert Panel. Diversifying Death - Shaping Perceptions for the 21st Century - Creative Conversations at the School of Design, University of Greenwich. This conversation pushes us to consider the creativity of belief alongside the complexity of ethics online that constructs new forms of public engagement, expanding the meaning and social consciousness of death and dying. Creative Conversations is a programme of research and events investigating the relationship between creativity, and commerce in the creative industries.
To find out more about Creative Conversations go to https://blogs.gre.ac.uk/creativeconversations/
Joining us are four exciting speakers, who will approach this topic from a range of disciplines and practises including: psychology and privacy online; physical and digital crafting as ongoingness; death policies and belief in hospices; and compassionate care within the funeral industry.
Year(s) Of Engagement Activity 2019
URL https://blogs.gre.ac.uk/creativeconversations/
 
Description Invited International Keynote in Zagreb on technology and its relationship to wellbeing 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Undergraduate students
Results and Impact This was a conference aimed at occupational therapy practitioners, educators, students and industrial partners interested in the potential of technology in promoting wellbeing across international contexts.
Year(s) Of Engagement Activity 2017
 
Description Invited keynote and workshop at the Co-Lab event in Melbourne, Australia 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Industry/Business
Results and Impact Myself and Helen Fisher were invited to facilitate a workshop and I was asked to give a Keynote about the broad research portfolio on which I am working. This was to an international audience. The event was well attended with much interest generated.
Year(s) Of Engagement Activity 2018
 
Description Invited talk: National Institute of Design, Ahmedabad, India 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Undergraduate students
Results and Impact Invitation to present the research project to the undergraduate cohort of students at India's leading Design school. Over 50 students, staff and professional practitioners attended and the talk sparked rich questions and discussion concerning 1) the different ways in which ongoingness practices play out in UK to India and 2) the role of design and digital technology within this.
Year(s) Of Engagement Activity 2019
 
Description Keynote: Design For Health Conference 2018 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Jayne Wallace was a keynote speaker at the international conference Design For Health 2018.
Design4Health brings together designers and creative practitioners with researchers, clinicians, policy makers and users to discuss, disseminate and test their approaches and methods. Together the community explore creative approaches and perspectives to enhance understanding and experience, and improve efficiency of health and wellbeing services and products. The conference provides an opportunity to reflect on how the disciplines of Design and Health might develop new ways of thinking and working, and how we might impact positively and sustainably on the social, economic and cultural factors within our communities and beyond.
Year(s) Of Engagement Activity 2018
 
Description National Institute of Design India Ghandinagar 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Postgraduate students
Results and Impact A workshop with masters students in India at the National Institute of Design focused on the notion of 'Ongoingness' and what it means to maintain ongoing connections with people even following death. Following a presentation about the project students and staff engaged with 'object questions' relating to different facets of how Indian cultures relate to ongoingness and practices of honouring the dead.
Year(s) Of Engagement Activity 2019
 
Description Symposium workshop: Design for Health: Intersections of Practice: Developing an ethical roadmap 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact Forty people attended a workshop as part of an international symposium. Interest was generated and there continues to be ongoing involvement from a number of the International partners who were there (New Zealand).
Year(s) Of Engagement Activity 2017
 
Description Talk given at a Royal College of Occupational Therapists: Regional Event in Sheffield 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact I was invited to speak at a regional event aimed at occupational therapy staff and students held at the Showroom Cinema in Sheffield. This was an exceptionally successful event and sparked interest in visits and meetings to build understanding of what the work is about and how it fits into a broader portfolio of research. Individuals were interested in how our work might be used in health care practice.
Year(s) Of Engagement Activity 2018
 
Description Workshop with participants within a care home in Sheffield 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Patients, carers and/or patient groups
Results and Impact Workshop with participants.
Year(s) Of Engagement Activity 2018