Pioneering with patients in Grampian

How Aberdeen’s Children of the Fifties are shaping Grampian’s approach to health data science

Wednesday 27th February 2019

Across Scotland, work is well underway to develop safe systems to allow the nation’s wealth of health-related data to inform the way services are planned and delivered, and enable research. More expansive and smarter use of health data and AI have the potential to deliver significant gains when it comes to improving the health of our nation.

Leading the charge in their area are NHS Grampian’s health intelligence team and the Aberdeen centre for health data science (ACHDS), a year-old joint venture between NHS Grampian and the University of Aberdeen.

Head of health intelligence at NHS Grampian, Jillian Evans, and Professor Corri Black from the ACHDS have been speaking to Healthandcare.scot’s Sarah Nimmo about some of the innovative and pioneering health intelligence alliances operating across the north of Scotland.

A public health physician by background, Professor Corri Black’s involvement in improving health in Scotland manifests in multiple ways. Beyond her role as a consultant in public health medicine within the NHS Grampian health intelligence team, she is also co-director for the ACHDS group, a professor in public health at the University of Aberdeen, and clinical lead of the Grampian data safe haven.

As head of NHS Grampian’s health intelligence team, her colleague Jillian Evans oversees the use of health data to inform how services are delivered to be more appropriate and responsive to the needs of the local population, both now and in the future.

Aberdeen’s ‘active citizen scientists’

Establishing a partnership with patients is central to much of her work, Professor Black explains. And while collaborations in Scotland between the NHS, academia and industry in health data science are increasingly recognised, the part to be played by the third sector, and indeed patients themselves is slowly gaining traction:

The core of all we have been doing for the last five or six years as a partnership between NHS Grampian and the University has been thinking about that patient partnership and public partnership”, she says.

One of the groups of people that we have done a lot of exploring of this with is a group of people called the ‘Aberdeen children of the 1950s’.

“These are people who were born and went to primary school in Aberdeen and there were around about 12,000 of them. They were all part of study when they were children that gathered a huge amount of data about them - their health, their life and their education - linked into birth records.

“Aberdeen is really special in that it started to collect all these details, and it has gone on collecting like that and is part of an internationally renowned collection of data within the Aberdeen maternity and neonatal databank. It’s a really important dataset.”

But these people still work with us; roll the clock forward 60 years and many of these people are coming towards the end of their working life and they are real active citizen scientists.”

Professor Black says it is a two way street. Beyond the areas of interest identified by researchers with this cohort, the citizens themselves have often led the way. They continue to contribute to the design of a secure environment for managing the kinds of data in question, highlighting potential concerns and ways to address them.

In recent events and workshops we have been working to understand what ageing means to them and how we might gather data about them and their ageing experience moving forward.

“And they have also been telling us what information they would like back that would help them inform their own lives, improve their own life experiences and be able to be allowed to monitor and be active partners in the healthcare.

 “Working with patients as partners right from the outset is rife here, in the design phase and throughout the whole process”.

iCAIRD

For researchers and clinicians, finding ways to use data to inform health and care that  a majority of people are comfortable with is not easy. The same nervousness exists when it comes to artificial intelligence – a term that, Professor Black believes “is used extremely broadly to mean many things to different people.”

Aberdeen is one of the partners in Scotland’s £15m industrial centre for artificial Intelligence research in digital diagnostics (iCAIRD), which brings together a pan-Scotland collaboration of 15 partners from across academia, the NHS, and industry.

Professor Black says work which that began at the start of February focuses on addressing people’s concerns about the use of artificial intelligence in healthcare, particularly when it comes to scanning:

What we are doing in Aberdeen and Grampian around that project is about trying to explore and understand what is acceptable and what would we need to provide in the way of information, infrastructure and governance in the use of data to make people feel comfortable.

The area we will be working on focuses on the use of computers to assist radiologists in making the diagnosis of a problem picked up when breast screening.

Mammography as part of the breast screening programme at the moment is extremely labour-intensive. Two separate highly trained radiologists have to view breast images in a timely fashion, and they have to be absolutely accurate every time.

We have a real shortage of radiologists across the UK and so there is a danger that if we cannot find other ways to help those radiologists work quickly and efficiently then there might be more delays in reaching a diagnosis and getting patients the care they need.

So the question then is whether there is a part to be played by a machine that could take a look at those scans and work in partnership with humans to identify areas that should be looked at more closely; acting as an assistant to the radiologists to speed things up make sure they are more accurate each time.

There are a lot of questions about whether the technology can work, whether it is acceptable, and what we need to see in order to know that it was performing in a way that we are comfortable and happy with. And this is work we can do in a four-way partnership with patients, clinicians, researchers and industry.”

One of the main reasons the partnership between the ACHDS and NHS Grampian is flourishing is a shared recognition of the importance and potential of patient involvement.

I love the idea of bringing local people and patients along with us”, says Jillian Evans.

This is a message we want to reinforce. When we build an infrastructure like this and we bring people along with us, information can have many other uses and we want people to be happy about the way we are using their data. People get nervous about sharing information and it can be unbelievably sensitive as we know but done well it can be extremely good as Corri’s examples demonstrate.”

Northern collaborations

The ambition of the health intelligence team, Jillian Evans explains, also extends to combining data from other service areas such as social care, and from across the north and north-east of Scotland.

Combining data creates a new set of intelligence that we don’t normally have. We have so much data in healthcare, there is no limit to it, but there’s so much untapped potential. Health data has limitations in its own right but if you combine it with other data sources can be something really interesting.”

Rather than continue to present ongoing challenges, the remote and rural nature of much of Grampian has necessitated innovation within healthcare services:

I think there is something about the uniqueness of Grampian and the north-east of Scotland; our size, the nature of our population, and the skills and togetherness of public sector organisations that can hopefully start to create some kind of sustainable legacy of intelligence that will set it quite apart from any initiative that is done on a national level.”

The north-east of Scotland has been so pioneering in that regard and we’ve got so many aspects of the service which are delivered in a remote way and in a virtual way just because we have to… We embrace this and we’ve had to embrace it, and we invested well to be able to do it.

When we touch on financial pressures and workforce challenges facing health and care services across Scotland, Ms Evans acknowledges this is part of every health board’s agenda.

There’s a recognition that everything does need to move forward and things need to change to keep pace with the world around us. In short, we need to make these [innovative] changes to be able to stand still. If we can manage to keep pace with current and predicted patterns of disease and demographic changes we will be doing really well.”

She explains that overcoming concerns about the use of health data “might actually allow us to keep services where we live, because with the challenges we have with our workforce and added challenges of geography, technology is one way in which you can manage to retain services and care locally”.

When asked about collaborative efforts with other health boards and areas, Ms Evans points to the relationship that NHS Grampian has with Orkney and Shetland, the Highlands, and Tayside, emphasising that “this is a north of Scotland health intelligence alliance. Most of the work is driven at the Grampian end simply because of our size, but so much more data is intertwined with the islands.

Part of my job is about trying to bring organisations together with the intelligence that binds us. It’s very much based on us not thinking about our population of 550,000 in Grampian, but a population of 1.3 million across the north.”

A big ambition of the heath intelligence team and ACDHS collaboration is to develop and introduce incrementally what we call our learning health system.

“What we are trying to create is an infrastructure that provides a place – maybe we could call it the people and the places of the North – where data comes together from a variety of sources, be it health or social care, education, transport or social media, and together it can provide some very useful intelligence for things like modern public health surveillance.

“Following up people and understanding the nature of disease better. It can also be used for the clinical and predictive informatics that Corri describes, and in research and innovation.”

“It’s the idea that we have a platform and infrastructure that allows us to perpetually build it with different data sources which can be used for multiple purposes and can provide a much more forward-thinking picture of health needs and give us a much more solid basis for planning in the future.”