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

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.

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.