Blog - Thriving in later life through care networks and data-driven care technologies

This blog originally featured in the Design Informatics Website, and we are grateful to the DI team for allowing us to reproduce their blog here.

The DI team involved in the ACRC — Billy Dixon, Cara Wilson, John Vines, and Larissa Pschetz — give the first of two introductions to the work they are involved in as part of this exciting initiative.

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The ACRC has a vision to produce high‐quality, data‐driven, personalised and affordable care that supports the independence, dignity and quality‐of‐life of people in later life who are living in their own homes and in supported care environments. Technical advancement and the contribution of the medical and life sciences is key here – but so is design. Design provides a crucial lens (and a wealth of engaging methods) through which to explore peoples’ values and to understand how new products, services and systems might address these values in ways that also address wider social, economic and environmental issues.

Very fittingly then, our team forms part of a workstream within the ACRC called ‘understanding the person in context‘, which is about ensuring that the data-driven care technologies and services developed within the centre put the needs, desires and aspirations of people at their heart. This means the DI team works with other members of the ACRC, advising on co-design and co-creation, seeking to make sure that those who might be affected by the deployment of these new services are involved in making decisions about their design and implementation right from the outset. We also spend a lot of time working with colleagues to ensure this work builds on the rich history of smart homes and on the subject of ageing-in-place (read Ubiquitous technologies for older people, presenting findings from research on the relationship between technologies and older users) which has shown how many people have privacy concerns around such technologies and their use can lead to less social contact (read Making family care work: dependence, privacy and remote home monitoring telecare systems).

As well as generally advocating for users, the DI team is leading research, as part of the ACRC, into value within informal care networks. A lot of the research around ACRC — and indeed, research on care and ageing more generally — tends to focus on institutional and “formal” forms of care delivered by service providers. Care in later life is often thought of in terms of statutory, private and third-sector health and social care. But this is only a fraction of the support that people in later life receive. A lot of care occurs within families, informally amongst neighbours and within communities, and within circles of peers. Here, people often provide significant help in ad-hoc ways — like giving a friend a lift to a hospital, picking up medicine for a spouse, putting the bins out for a frail neighbour — or indeed find themselves acting as a full time (but unpaid) carer for a loved one. Such acts of care are not recognised financially, and they are often impossible to measure or formalise. Yet breakdowns in informal care networks like these can often be a trigger for unplanned transitions in care, leading to a hospital or care home admission that could otherwise be avoided.

In our work on ACRC, we are setting out to compliment research focusing on formal care provision by exploring with retirees and elders what these informal care networks look like from their perspective. We are enquiring into what participants value in these networks, and how data-driven technologies and services might sustain, maintain, and grow such networks in the future.

Where we are now

As of October 2021, we are very early on in our research, but we have completed a pilot of our first study. We have developed a design probe that uses the metaphor of a tree to encourage reflections from people on their care networks, especially around the reciprocal qualities of care and the role of non-humans within these networks in both giving and receiving care. We will say more about this work in a future news post on the Design Informatics site.

What we’re doing next

The ACRC will take us on an exciting journey over the next several years. The second part of this blog will follow in due course.

If you’d like to get in touch with about what the DI team is doing on the ACRC research project, please contact Cara Wilson at cara.wilson@ed.ac.uk

Learn more about the links between DI and ACRC on our website, www.designinformatics.org/research_project/advanced-care-research-centre-acrc/