Digital tool could help prevent deaths in people with learning disabilitlies – study

A digital tool could identify future health risks in people with learning disabilities and support earlier action to prevent avoidable deaths, researchers say.

Using information including age, sex and existing health conditions, the tool indicates which conditions a person may be more likely to develop and when, based on patterns seen in people with similar health profiles.

People with learning disabilities die, on average, 20 years earlier than the general population, while 39 per cent of deaths are deemed avoidable.

The tool was developed through DECODE, a National Institute for Health and Care Research-funded project led by Loughborough University and Leicestershire Partnership NHS Trust.

Prof Thomas Jun, co-lead of DECODE and an expert in sociotechnical system design at Loughborough University, said: “I 100 per cent believe this work will save lives, empower healthcare professionals, and improve the quality of life for people with learning disabilities and their carers.

“We are now hoping to secure funding so we can further develop and test the tool. We feel we are halfway towards creating real change.”

Researchers used artificial intelligence, statistical methods and health data from more than 33,000 adults with learning disabilities across England and Wales to develop the system.

The team believes it could help healthcare professionals identify potential problems earlier and work with people with learning disabilities and their carers to take preventative action.

Researchers say the tool could be ready for trials in healthcare settings within four years, once it has been refined and tested using larger healthcare datasets.

Dr Satheesh Gangadharan, consultant psychiatrist at Leicestershire Partnership NHS Trust and co-lead of DECODE, said: “People with learning disabilities have an annual health check with their GP.

“Our aim is to integrate the tool into these health checks.

“If healthcare professionals had access to a tool like this during that visit, they could see not only the conditions a person currently has, but also the risk of future conditions developing.

“This would allow them to consider interventions and prevention strategies earlier, potentially preventing future conditions from developing.”

The tool was designed to help tackle the challenge of multiple long-term health conditions among people with learning disabilities, including diabetes, heart disease and mental health conditions.

Research by the DECODE team found that 86 per cent of the people with learning disabilities studied were living with at least two long-term conditions, with some having as many as 12.

Researchers said it has previously been difficult to understand how different conditions influence one another and how an individual’s health may change over time.

Prof Georgina Cosma, an expert in AI and data science, and colleagues analysed health datasets from England and Wales to identify combinations of conditions among people with learning disabilities.

“Some of these combinations are different from what is seen in the general population, and this has never been known before,” said Gangadharan.

Those findings were used to develop the digital healthcare tool, which produces visual maps showing how different conditions may develop and interact over time.

Cosma said: “The tool allows healthcare professionals to select an age group, sex and existing conditions, and then visualise how health trajectories may unfold over a given number of years based on observed population data.”

People with learning disabilities and their carers have contributed to the project by sharing their experiences of healthcare, discussing how the technology could be used and helping to develop accessible resources.

These include an animation called “Maria’s Story”, which explains how health can change over time, the impact of lifestyle choices on wellbeing and how the DECODE tool could be used, as well as colour-coded icons intended to make health conditions easier to recognise and understand.

Dr Alison Drewett, a DECODE research associate and speech and language therapist, said some people with learning disabilities can find it difficult to explain how they feel or make sense of physical changes.

“The tool will help flag potential health conditions and, alongside the supporting resources, help address this challenge,” she said.

Russell Lacey, 45, who took part in the project, said: “I think the DECODE project can help people like me.”

Abigail Fitzcochrane, 22, who has dyspraxia and autism, said: “I get quite scared around GPs and healthcare professionals because I don’t always know how to explain how I’m feeling.

“Sometimes my family has to help speak for me.

“I think DECODE will help people understand what GPs are saying and make healthcare communication easier. I also think the technology will really help people.”

Researchers are now seeking funding for a second phase of DECODE, which would include further development and testing of the tool, expansion of the accessible resources and exploration of how they could be integrated into healthcare settings and apps.

The next phase would also focus on helping shape healthcare guidance and policy for people with learning disabilities.

The team plans to release a policy briefing with recommendations focused on earlier intervention, prevention and more joined-up care.

The current phase of DECODE ends in August 2026.