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Panel calls for data revolution
The second day of the Health and Care Innovation Expo got off to a lively start with Care.data in the spotlight once again. Tim Kelsey, Director for Patients and Information for NHS England kicked off the packed session by setting out his vision for the future NHS. Kelsey said, “We’re all here at Expo because we all believe in a high quality NHS that is available to everyone, but we don’t know if everyone is getting the best care and treatment. Over 45,000 people under the age of 75 years have heart disease in this country and, thanks to people like Bruce Keogh, we know we are now saving more lives than ever before. But we don’t know what happens outside hospital.”
Tim was joined on the panel by Sarah-Jane Marsh, Chief Executive of Birmingham Children’s Hospital, who spoke passionately about the role of data and information in safeguarding and patient safety. Sarah-Jane said the NHS must change the way it thinks about data, claiming, “Security trumps patient safety every time. It is our duty to challenge this principle. We can’t just assess the risk of doing something; we must also assess the risks of not doing something.”
Sarah-Jane challenged NHS England to explain the benefits to the public and said, “We must help people understand that this is not something we should just do for ourselves. In my mind, we must do this to help the generations of the future. We cannot afford to keep making the same mistakes.”
The British Medical Association’s Dr Tony Calland, Chairman of the BMA’s Medical Ethics Committee, was up next, talking about the need for balance between the need for medical confidentiality, which must not be eroded, and learning and teaching.
“Data has revolutionised our attitude to care”, said journalist and commentator Roy Lilley, who was the final speaker up. “Data is the foundation of quality and the NHS must be ambitious”, said Roy. “I hope NHS England listens to the common sense of the British people, they are usually right. In this room, only five people have opted out from about 100.” Roy went on to say, “Let’s not blindly follow in the footsteps of what has gone before. I don’t want to do that, I want to know what’s gone before, what works and what doesn’t work. I want to learn the lessons.”
A lively question and answer session followed with questions from the floor about a range of issues including data security and engagement.
So what this shows is, even in an audience composed on enthusiasts for the NHS, 5% of people have still opted out. That number is astonishingly high.
As people over 75 are not considered a working unit NICE are withholding life saving drugs from this age range, there is no comment from Mr Tim Kelsey regarding that issue is there?