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Cultural shift needed to keep trust in use of patient data

A radical culture change in the NHS, and across the health data and medical technology community, is needed to make sure that the NHS can deliver benefits from patient data, and to retain public trust, says a new report authored by Queen Mary University of London academics.

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The report, published by the Academy of Medical Sciences, outlines principles that must be adopted by the NHS and industry, in order to protect the privacy, rights and choices of patients, provide safeguards for the use of patient data, and enable all NHS patients to benefit from the use of health technologies.

Health technologies that are becoming increasingly important include wearable devices, mobile phone apps and intelligent monitoring devices. Smart insulin pumps for diabetes, artificial intelligence assisted pregnancy ultrasound scans, and houses designed with smart technology to support dementia patients, are examples in the report where patient data are already being used to develop health technologies.

‘Huge potential to improve our health and wellbeing’

Professor Carol Dezateux FMedSci, Chair of report Steering Group and Professor of Clinical Epidemiology and Health Data Science at Queen Mary’s Blizard Institute, said: “Health technologies that use patient data have huge potential to improve our health and wellbeing. We are already seeing the development of wearable monitors linked to automated treatment that are revolutionising the lives of patients with long-term conditions such as diabetes. Our workshops with the public emphasised that they want to see the NHS deliver on the potential of data-driven technologies, giving better and safer health care for all.” 

The report highlights the potential of the NHS to become a world leader in the use of patient data for technologies to improve healthcare, and emphasises that patients and the public expect the NHS to keep control of patient data.

It also calls for action to be taken so the NHS can evolve into a system that learns from itself, feeding back digital information about patients and using technology to support, not replace, face-to-face healthcare. The NHS must also share in the wider benefits of contributing patient data for these new technologies.

Technologies that free up clinician time for direct care

Dr Kambiz Boomla, member of the report's Steering Group, GP in Tower Hamlets and Clinical Senior Lecturer in the Clinical Effectiveness Group at Queen Mary’s Blizard Institute, said: “Joined-up patient data improve patient experiences and healthcare as a whole and saves us all time in wasted trips and tests.

“My patients don’t want to be told ‘the robot will see you now’: they want to see a human. However they understand that new technologies can allow patients and their carers to manage their own health better and free up clinician time for direct care. That is the future they want us to deliver.”

“Recently, at my GP practice in East London, an elderly lady with dementia and her daughter came to see me. Her daughter explained that her mother had been discharged from hospital after a fall when she had been told her mother’s brain scan showed she had a blood clot on the brain. In two clicks of my mouse, I was able – from the GP surgery - to see the brain scan report. It told me the clot was old and was smaller than it had been. As a result, I didn’t need to send her mother for another scan and could reassure her daughter immediately.

Professor Sir Robert Lechler PMedSci, President of the Academy of Medical Sciences, said: “This report is based on high-quality, in depth conversations with members of the public, hospital doctors, GPs and nurses. We are calling for the NHS, regulators, industry and other key stakeholders to work together to adopt the principles set out in this report to make sure that patient data is used in a fair, transparent, safe and effective way.

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