How the Advanced Care Research Centre is re-imagining elderly care

However it is described, the £20 million Advanced Care Research Centre (ACRC) has enormous ambition – and data is vital to its mission.

Picture: Shutterstock

Covid-19 has accelerated the seven-year partnership between the University of Edinburgh and Legal & General, with researchers from across the university ready to start work next month on a range of challenges designed to eventually help deliver root-and-branch change to the care system.

As Nigel Wilson, chief executive of Legal & General, puts it: “It is time to move from planning to doing.”

The project had been 18 months in the planning phase before it was

formally announced in January.

Further preparation work was planned, but events intervened.

John Godfrey, corporate affairs director for Legal & Genera, says: “Covid-19 came along and we thought we’d better get on with it. What was an important topic has taken on much more urgency – we can all see the care sector needs reform.”

Professor Jonathan Seckl, Vice-Principal of the University of Edinburgh, agrees. He says: “This atrocious pandemic came sweeping in and revealed real problems and inconsistencies in this Cinderella sector.

“This centre is an opportunity to transform how we deliver care, including how we use data, artificial intelligence and robotics to improve the environment for people in their own home or those moving into supported accommodation.”

Data and data innovation is the beating heart of the ACRC’s seven “work packages”.

Three cover big themes: public debate and stakeholder engagement; the creation of an academy to develop future care leaders and thinkers, and improving the quality of data. This could be summarised as national conversation, next generation and better information.

Beyond this are four linked and complementary programmes of research and development:

- Understanding the person in ­context

- Data-driven insight and prediction

- New technologies of care

- New models of care

Professor Heather Wilkinson, who has almost 25 years’ experience in elderly care and dementia research, is deputy director of the academy and leads the “person in context” workstream.

She says: “While the quantitative data, the numbers, are crucial to this project, so is the qualitative data – the stories, if you like; what the care worker picks up, what a dementia patient says. Human data is absolutely crucial and we need to put equal value on that kind of data, because the person is at the centre of everything the ACRC is doing.”

The project recognises the value of anecdotal data to help build a full picture of an individual and shape their care appropriately. However, there is also a realisation that research use of health and social care data is ­constrained by a reliance on data recorded in very structured and specific ways, when a wide range of important information surrounding care is often not so structured.

Natural language processing – where artificial intelligence and other elements of computing science analyse human language – will be used to enhance existing well structured data by adding additional data from “free-text” clinical records.

Professor Ian Underwood, an expert in sensors and director of the ACRC Academy, says: “As Professor Bruce Guthrie [the University’s ACRC lead] puts it, we have ‘hard’ data about when people enter or leave hospital and what happens inside. But we don’t have the same level of data for care, which is more about general frailty and degeneration, often from several ill-defined conditions. Using NLP will allow us to take a more nuanced, subtle approach.”

Godfrey believes joining up the data is vital to delivering on the ambitions of the centre. He says: “When care sector data is not fully joined-up with healthcare data, it’s hard to get the full picture of an individual. We need that if we want to ensure people are supported to live better lives for longer in their own homes, then enjoy high-­quality care when they need to take that step.”

Wilkinson agrees: “Most of my work has been around people who are excluded and how to connect them with each other, with their families and with society.

“The work package I’m leading is focused on that – drilling down into individual experiences to get a better view and explore where connections are broken or blocked.”

Part of this will involve traditional data gathering at regular intervals from just over 200 people in Scotland and north-east England (the University of Newcastle is also involved in the project) from a range of rural, urban, suburban, coastal and post-industrial settings.

Wilkinson says: “Individual projects will then be able to draw down on a fascinating mix of data from that cohort in different ways and glean different things from it.

“I’m very interested in that sense of space and place. One way of collecting data is ‘walk-along interviews’, to show how elements of the environment are relevant to a person’s care, health and well-being. Data is fundamental to everything we are doing at the ACRC; it’s about bringing all kinds of data together.”

It’s also about bringing all kinds of expertise together – not just data scientists and experts in robotics, informatics and AI, but engineers, built environment experts and a wide range of medical experts.

Underwood says that collaboration across university departments is essential to tackle big, real-life challenges.

He says: “As an engineer, I can help with connectivity. Engineering has been about connectivity through history – building roads, then ships, cars and planes and then TV, phones, computers, the internet. Now it’s all about data – connecting up data, curating it and analysing it, then putting it to good use. But I’m just part of the big picture.

“Diverse teams generally operate more effectively than teams of people who are very similar; it’s about people with different perspectives who bring different tools to problem-solving. You have to learn the languages of other disciplines and understand the skills and tools they bring, because you are part of a ­common goal and facing common challenges together.

Godfrey says this holistic approach is vital to avoiding narrow conversations and making real change. He says: “The debate is always about the financing of care, and politicians get stuck there. Wider debate grinds to a halt. Financing is important but we need to talk about care in a much broader sense, including the way buildings and care packages are designed.

“We know there isn’t a single answer to make care better – but we’re setting the bar very high and hoping for the emergence of whole new methods of care, based on sustainable healthcare and financial models.

“Data is fundamental; any changes must be strongly evidence-based. If we don’t know the full picture, at an individual level or population level, we cannot decide how to improve things. We want people to live longer with better health and greater independence – and technology and data should make it easier to achieve real change.”