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NHS: Healthcare Data - Motion to Take Note

Part of the debate – in the House of Lords at 12:10 pm on 6th September 2018.

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Photo of Lord Bethell Lord Bethell Conservative 12:10 pm, 6th September 2018

My Lords, I really am very happy to be here and give my maiden speech today. I thank the noble Lord, Lord Freyberg, for calling this important debate and for his powerful introduction. I declare an interest: I am a trustee of the Scar Free Foundation, which is a medical research charity.

I thank the staff and the doorkeepers who I remember for their kindness and warmth when I was a boy and used to sit on the Steps of the Throne. They would help me find my way around and sometimes give me sweets that they kept in the cabinet where they kept the signing-in book. Even now, when I am walking round in circles they help me, but they do not give me any sweets anymore, I am afraid to say.

I come from a family of campaigners. The first Lord Bethell was a Liberal MP, a radical who wanted to change the world. He was a self-made son of a gardener who campaigned for the rights of the disfranchised slum dwellers of Edwardian Britain. He was a fervent campaigner for temperance. My father, Nicholas, who some noble Lords may remember and who I miss greatly, campaigned for rights for refuseniks, for the mujaheddin against the Soviet Union. He stood up against authority. He fervently did not support temperance. It is my ambition to walk in those steps. I would like to use the House of Lords as a platform to campaign for a better world and to challenge authority when necessary.

But picking causes does not feel easy these days. The issues are not clear-cut and this debate is a vivid example of that. On the one hand, as a number of speakers have mentioned, I am terrified of the threat presented by big data. We cannot underestimate the co-ordinated, criminal enterprises that steal and blackmail with data. I have had my financial records stolen many times. I have had much money removed from my bank accounts and I am frightened. I am getting to know some of you better, but I do not want you to know what is in my medical records and I do not want to know what is in yours, so this is something for us all to be concerned about.

I am also worried about the sloppy, arrogant culture of the big tech giants. In my background, I have campaigned against the racism of the far right in Britain and we had to work very hard—it remains a work in progress—to try to get tech companies to take down horrible material from the internet that foments hatred and violence. Their stubbornness in this matter is legendary.

It would feel at first blush as though the campaign against big data feels like a Bethell-shaped cause to challenge authority, but there is an important dilemma here, because I recognise that modern medicine is providing incredible dividends. The costs of medical provision are increasing dramatically more than global growth, and in my own life, my family have benefited tremendously. My wife’s sight was saved in the Moorfields Eye Hospital and one of my daughters was saved by important new medical developments.

So how can we make these two join together? I met a Scottish health professional recently who told me about an algorithm he had written that dramatically improves the treatment of dementia and Alzheimer’s. He had done this by using the records of millions of patients in a huge mathematical exercise. Where had he done that? Five years ago, he moved to Beijing and worked closely with the Chinese Government. He was very complimentary about his British associates. He told me that they were helpful but just did not have the technology and permissions to do the work he needed to do.

I remember when my father had Parkinson’s disease. Hospitals would lose his files so frequently that we travelled with a ring binder with photocopies inside. I remember visiting an eminent professor of neurology at John Radcliffe University. We went into his office and it was an incredible sight. From the floor to the ceiling, there were piles of paper. Every single horizontal surface was covered in reports and folders. We were waiting for this make-or-break decision about my father’s treatment and the professor turned to us and said, “I’m terribly sorry but I seem to have lost your file”. That moment felt like a metaphor for where we are in Britain with medical records.

With an average age of 69, your Lordships have a remarkable reputation for longevity. I personally want to live until I am 100 and I want my children to live even longer. I cannot think of a better way to make the world a better place than achieving that kind of objective, but I do not feel that this will happen if we have a ramshackle approach to record provision. This was brought home to me through my work with the Scar Free Foundation. I got involved with it when one day at home, a guest dropped a cup of tea on my 6 month-old son. He was scalded dramatically down one side of his body. His mother’s side of the family is Chinese and has delicate skin; members of her family with similar scalds have horrific disfigurement and disability. My family is Scottish. We are tough and leathery—I do not scar at all. During my son’s treatment, it was ambiguous which way he would go. Would he recover well or not? I am pleased to say that he did and is in very good shape, but it shows the genetic difference between families in a vivid way. For our charity, trying to figure out what causes that difference and apply those lessons to scar treatments is critical.

The NHS spends £4.5 billion every year treating difficult wounds and scars. The full cost to this country of scarring and internal fibrosis is incredibly high. I recognise the opportunity for Britain. Others will explain much better than I can the implications for jobs and health outcomes, but I applaud the code of conduct put together earlier by the Minister, which I cite as a good example of the kind of cause that I would like to be involved with here in the House of Lords.