Advanced Care Research Centre
In January 2020, the University of Edinburgh and Legal & General announced a major partnership to improve understanding of care in later life and to revolutionise how it is delivered.
The challenges faced by the care sector have been thrust into the public eye due to the tragic impacts of COVID-19. Presciently, in January 2020 the University of Edinburgh and Legal and General announced their creation of the Advanced Care Research Centre. We caught up with Liz Casely, ACRC Programme Manager, Prof. Ian Underwood, Leader of the ACRC Academy, and John Godfrey, Corporate Affairs Director at Legal and General, to discuss how they aim to transform care in later life with their timely project.
Improving care for those in later life is not only a noble cause but a practical necessity as many countries face a sustained increase in ageing population. In Scotland alone 19% of the population is now aged 65 and over, the birth rate has been contracting for over a decade, and the usual boost provided by migration is under threat due to Brexit. This problem has manifested itself in issues regarding retirement age, pension restructuring and old-age poverty, which affects 16% of UK pensioners. Coupled with the tragic impact of COVID-19 in care homes, the need for tectonic shifts in the health and social care sector is clear.
The Advanced Care Research Centre, created in early 2020 following nearly two years of preparations involving the University of Edinburgh and Legal and General, aims for no less than to “transform care in later life using personalised care enabled by data science, artificial intelligence, assistive technologies and robotics embedded in systems of health and social care which are highly responsive to the wishes, priorities and needs of individual people in later life.” This transformation will be enabled by Legal and General’s £20 million investment in the ACRC over 7 years, supporting independent research whose results will be made publicly available for the benefit of society.
People and care
The current care system that the ACRC hopes to revolutionise suffers from deep-set structural issues. John Godfrey, a key representative of Legal and General in the project, discusses how the economic models underpinning care homes rely on low wage bills and high occupancy rates, not to mention the issues facing the hidden informal care sector: “There are all these existential questions, so how do you then modernize and create a much more fit–for-purpose sector. We thought that was a 7-year project. It has now been brought to the boil much quicker than we expected.”
The ACRC aims to tackle these issues head on. Liz Casely, ACRC Programme Manager, emphasises the importance of “putting the person in later life at the centre of everything we do.”
Godfrey emphasises the need for a holistic approach to answer the aforementioned existential questions: “We don’t think there is a single answer to care that will generate huge improvements on its own. And there probably isn’t a single academic discipline that will bring about all the change you need.”
Similarly, Professor Ian Underwood, the leader of the ACRC Academy which will offer a four-year, thematic, structured, cohort-based PhD with Integrated Study, emphasises the importance of academic collaboration: “It used to be that most of the exciting research happened at the centre of disciplines but that has changed. Research has become much more multidisciplinary. Real world challenges require diverse and multidisciplinary teams, and the ACRC is a superb example. If you want to pursue research aimed at delivering affordable, sustainable, high quality care to an ageing population that is growing in volume and in the complexity of its needs, you require clinicians, nurses, social scientists, engineers, and computer scientists and more all to work together.”
True to this vision, the centre is working on a variety of research projects requiring input and collaboration from various fields. Research to “understand the person in context” will use mixed methods and qualitative techniques focusing on personal interactions with people in later life, their families and care workers to assess the issues that need to be tackled. Results of that research will guide more quantitative projects focusing on “data driven insight and prediction” and the development of “new technologies of care.” These insights will then culminate in the creation of comprehensive “new models of care.” Bringing together academics and doctoral students from a myriad of disciplines, will allow us to go beyond typical notions of limited multidisciplinary research involving e.g. physicists, chemists and engineers to achieve what Prof. Underwood coins “pandisciplinarity.”
Importance of data
Data is at the heart of how the ACRC will achieve its goals, so the centre aims to improve existing data and harvest new data to facilitate better research and innovation in the care arena. At present, the fact that care data and health data in the UK are not sufficiently synchronised is posing problems. Casely explains: “One example we give is that we don’t know as a matter of record who lives in care homes. We know from medical records who has been in and out of hospital and when; we know where someone ordinarily lives; but we do not know when someone is living in a care home – no one knows, apart from the care home. We know after they pass away, because records will show where they were resident when they died, but before then we don’t know that they are there. One way to find out might be to look in GP notes. So all the information is there, but it is just in note form. Some of it is written, some is typed, but all of it is unstructured, uncoded, it is not in a tick box, it is not consistent. Uncovering that information is difficult but potentially very valuable.”
The ACRC will be working with DataLoch (link) to enhance its data structure using techniques such as Natural Language Processing (NLP) and Artificial Intelligence (AI) to extract value from free-text data. This data and other data collected by researchers then has the potential to be used for various projects. For instance, Prof. Underwood draws on his background in bio-sensors to envision going beyond existing technologies that notify third parties if an older person has fallen, towards fall probability prediction then implementation of fall probability reduction and minimisation protocols.
More broadly, the centre is conducting research to better assess general frailty and its trajectory, as this is not something the health sector is currently well equipped to do. Casely discusses how these trends can be used to improve quality of life in people’s final years: “If you can better predict the evolving level and nature of someone’s frailty, you can better predict their care requirements, meaning medicine and residential or other types of care. You may also be able to slow down the trend.”
While the extraordinary circumstances of 2020 have put the whole care sector under the spotlight and thus brought the ACRC’s work to the fore, the Centre’s ultimate goals extend far into the future. Prof. Underwood emphasises, “In talking to people about the ACRC, I frequently say that it is not the Advanced Care Centre, it is the Advanced Care Research Centre. We are not here to tackle today’s problems in the next few months and solve them by the end of the year. We are not here to develop short fixes for the COVID crisis. We are here to do research over the next three, five, seven years, whose outcomes will propagate into societal change and are intended to make transformational differences on a timescale five to ten years beyond that.”
In his role as head of the Academy, Prof. Underwood intends it to develop a new generation of research-trained leaders in the sector: “We will train and equip people to observe and gather evidence to identify where strategic change is needed; who are capable of actioning, implementing and delivering that change for the longer term good. People who can recognise, ‘if we wanted really high-quality affordable sustainable care, we wouldn’t start with the system we have today’ and can then move on to ‘How can I get from where we are today to this different / better structure / service / architecture / methodology?’
In addition to producing future experts, Casely aims for the ACRC to develop into a centre of excellence on care in later life: “Along the way we want it to become a recognized and respected centre that is the go-to place in the UK for innovation and academic research on care in later life. Success will include engaging with government and across the whole sector on the debate around social care and being part of that conversation. Success will include growing the centre such that it becomes a sustainable institute in its own right within this university and in partnership with others beyond the initial seven years of funding.”
The aspiration of all involved is that the establishment of a new generation of leaders and a foundation of authoritative research will enable the ACRC to bring about transformational new models to improve the care of those in later life for generations to come.
This problem has manifested itself in issues regarding retirement age, pension restructuring and old-age poverty, which affects 16% of UK pensioners
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