Could failure of NHS IT systems have contributed to 13-year-old's death?

Health Secretary highlights coroner's ruling that 'lack of co-ordinating record' was a factor in death of teenage asthma sufferer

NHS trusts are still using siloed IT systems that don't speak to each other, impacting on contiunity of care

The need to improve interoperability and information sharing across the NHS was highlighted this week when Health Secretary, Matt Hancock, recounted the death of a teenage girl whose mother claimed the failure of current systems had stifled the care she received.

Speaking at The Royal Society of Medicine’s Medical apps: mainstreaming innovation event, Hancock told the story of Tamara, who was diagnosed with asthma as a baby.

She was in and out of hospital with acute asthma as she grew up and was seen 47 times in four years by medical staff.

Getting the right tech, getting systems that can talk to each other in the NHS, matters so much. Because the only question when it comes to tech is this: does this tech save lives and improve lives?

Almost every time, her mother, Dawn, would have to tell the doctors and nurses her medical history from the beginning.

Dawn said: “Every time they were treating her like a new patient.

“They didn’t know Tamara’s condition, what medication she was on, or what her treatment plan was.

“Staff at three hospitals, 30 minutes apart, had no way of accessing the same records.”

She said she felt staff thought she was being an ‘overprotective mother’, but she was the only link they had with the previous clinician.

On 10 April 2014 Tamara started experiencing breathing difficulties. An appointment was made to see her GP the following day, but her condition deteriorated during the night. Paramedics were called, but sadly Tamara died. She was just 13 years old.

Hancock said of the case: “Interoperability: a word we often use when we talk about healthtech, but for most people that word means very little.

“The coroner said one of the factors in Tamara’s death was the lack of a ‘co-ordinating record'. And Dawn told me she believes it would have made a difference; that if our systems could speak to each other, and if Tamara’s records could have been safely accessed by all the clinicians treating her, it would have made a difference.

“So, when I talk about interoperability, I’m not really talking about IT. I’m talking about saving the lives of people like Tamara.

When I talk about interoperability, I’m not really talking about IT. I’m talking about saving the lives of people like Tamara

“I mean ‘clinical memory’; a clear and comprehensive record of each individual’s health history and medical needs that can be shared, in absolute confidence, between medical teams across the NHS.

“It’s why getting the right tech, getting systems that can talk to each other in the NHS, matters so much. Because the only question when it comes to tech is this: does this tech save lives and improve lives?

To drive the change needed to achieve this vision, Hancock announced the creation of a new specialist unit – NHSX – which brings together all of technology leadership from the Department of Health and Social Care, NHS England, and NHS Improvement into one place and setting national policy for NHS tech, digital and data and creating standards that work across the whole of health and care.

It will be led by the Government’s digital policy chief, Matthew Gould, and will have three initial priorities – Ensuring tech saves time for staff so they can focus on patients; giving patients the tools to access information and services directly; and creating a system that means patient information can be accessed, safely and reliably, wherever it is needed.