From patients to care.data, NHS Expo uncovered

Highland Marketing reports on some of the key stories at the Health and Care Innovation Expo

Sir David Nicholson had just 27 days to go in his job as NHS England’s chief executive when he told Manchester’s Health and Care Innovation Expo of his greatest regret.

“The biggest and most obvious mistake I have made was when the Healthcare Commission reported on Mid Staffordshire Hospital. I went to the hospital and I didn’t seek out the patients’ representatives, the people at Cure the NHS. I made the wrong call. I didn’t want to be involved in a media circus. I was wrong, I was absolutely wrong.”

Sir David had learned that there was no shortcut to understanding – this required talking to patients and relatives. “I didn’t do that and got myself in a tangle of talking to people through the media. That was a mistake that I bitterly, bitterly regret. Since then I have met lots of people.”

Admissions of communication errors came elsewhere in the conference too. Tim Kelsey, NHS England’s national director for patients and information, said of care.data: “I hold my hand up now, it wasn’t good enough. We have all learned an enormous amount about public information. That is why I took the decision to give us another six months to properly explain why this is so important. I don’t think people on the whole realise that for a safe, high quality NHS we have to have an intelligent, data driven NHS.”

Yet despite media criticism and public concern, care.data received a great deal of support at the conference. Sarah Jane Marsh, the chief executive of Birmingham Children’s Hospital gave a powerful story to emphasise the real risks and consequences of not sharing data.  She recalled the case of Keanu Williams, a child who was born in December 2008 but who was murdered by his mother in January 2011 when, according to reports, he had 37 injuries.

“He presented at his GP practice, to his health visitor, to community paediatrics, to emergency departments. And every interaction he had in isolation looked to be ok. People thought they could explain why he had these injuries. But in reality they had been inflicted by his mother.

“We couldn’t see that the information was linked together. Worse than that, we didn’t know he had two older siblings who had been taken into care because they had been abused by their mother.

“The shocking part of the story is not just what happened to Keanu,” she added. “It is that it happened in 2011 and it is now March 2014 and still we do not share that data. In the health economy I work in that could happen again. Issues of governance and data security trump patient safety.”

Kelsey now has a difficult job communicating the benefits of the programme, she said. But he received even more support from Roy Lilley, writer, broadcaster, commentator, independent health policy analyst and editor of nhsManagers.net. Lilley, whose first comments at the conference were to call for the Care Quality Commission (CQC) to be closed down, said data was the foundation of quality, before telling delegates to ignore “dozy” MPs and many others, who were, he claimed, complaining now but were “asleep” when the Health and Social Care Act went through.

He also said this data, unrivalled anywhere else in the world, should not be given away for free. “Are they going to sell it? Well I sure as hell hope they don’t give it away,” he said. “It’s a fabulous asset, it’s worth a fortune. Yes we should collect it carefully, yes we should use it carefully. Yes, we should think carefully who gets it. But don’t give it away. Why would we give away an asset like that? Why would we give away our crown jewels? We are the only health service in the world that has data going back to just after I was born. We’re the only system in the world that has that data. We are the only people that can daisy chain it together and make sense of it.”

But this was a conference about far more than a departing chief executive and a headline of data sharing programmes. It was about hearing from a wide range of people in the NHS.

One junior doctor told Professor Lord Darzi that she currently worked in hospital with a fantastic electronic patient record system that interacted with GPs, providing access to blood results, medication histories and more. But she was concerned she would be moving to a hospital without such an important tool. She could not understand why some hospitals were not adopting innovations and were not learning from what other parts of the health service are doing so well. Lord Darzi told her to knock on the door of her new hospital’s chief executive and offer to take them to her old place of work. “Be bold and do it,” he told her. “The reason you are doing it is because of the patient. Always go back to what matters and no one will get rid of you.”

The event itself was at least in part about listening to patients, who formed a percentage of expo attendees. Speaking at the launch of NHS Citizen, Lord Victor Adebowale, said to patients in the audience: “If you want to be heard, speak up. If you want to get involved, get involved.” He added: “It’s not just about your voice and it’s not just about us hearing you. We need to develop means by which you can tell us you have been heard. The proof of the pudding is that those small voices of people who need the NHS the most are heard the loudest. It is those people who will create the future.”

The future survival of the health service required new and different approaches in other areas too, the conference heard. Self-care was one issue that the NHS was trying to address. “It’s the approach that needs to be revolutionary and not the care,” said Colin Cheesman, trustee and hon secretary of Parkinsons UK. “Being told you have a condition that is going to turn your world upside down can be devastating, at that point you are going to feel negative, worried and resentful. It is right that from that very point help and support is needed, not just to treat the immediate symptoms, but to treat the individual as well. The individual will need to develop skills, knowledge and confidence that will enable him or her to feel part of the treatment plan, to contribute to the outcomes, having a sense of feeling in control.” He asked: “Do we need to invest more time and effort here that may repay itself many times over in the long term? It’s about managing your life, it’s your life and it’s a job for life.”

And the NHS needs to change in other ways, for example when tackling mental health, a term many at the conference found to be fundamentally unhelpful. “We never talk about general medicine,” said Dr Geraldine Strahdee, national clinical director for mental health at NHS England. “We talk about diabetes, cancer, urology, kidney diseases, skin diseases.” She and others questioned why the NHS still uses the general term mental health.

Other changes could be facilitated by technology, the conference heard. This was not necessarily expensive technology, but was the everyday tools that people were increasingly using. A smartphone in the pocket of a patient was now the “pluripotent stem cell for healthcare regeneration,” said Sir Bruce Keogh, national medical director at NHS England.

“Imagine a phone increasingly configured for medical applications, with wearable biosensors that will simply turn us into walking event recorders,” he said. “They will sense and display our vital signs. They will perform analyses for us to look at. They will acquire images from other parts of the healthcare system for us to look at. This will be strengthened by user controlled cloud based applications and added analysis. This will give us massively personalised control over our healthcare, in a way that we can only just begin to image.”

He summed up: “These are the tools for digitising humans. The train has left the station. My question: Are you on it, and if not, at which station are you going to get on?”