Margareta Pagano: Don't fear sharing NHS data as biomedical revolution could save lives

On 3 September, it will be 10 years since my mother, Bjørg Pagano, died at Addenbrooke's Hospital as a consequence of a series of catastrophic medical errors. Although suffering from rheumatoid arthritis, she was otherwise a healthy 73-year-old when she went into hospital for a laparoscopy to establish whether cysts on her ovaries were benign or malign.

Tragically, the surgeon accidentally sliced through her ureters during the surgery. Although in great distress, this huge error remained unnoticed and she was discharged after three days. She was then rushed back to hospital a few days later and an emergency, and unnecessary, operation was carried out at midnight by a locum breast surgeon.

Eventually, the medics discovered the damage to her ureters and she endured another three-hour operation to repair the first surgeon's mistake.

By now she was weak, had spent several days in intensive care, was suffering severe abdominal pain and had urinary infections. Then she broke her hip getting out of bed –she disliked asking the nurses for help. This led to another op – a partial hip replacement – and, as night follows day, she contracted C.diff and MRSA.

Then came the killer blow. The doctors prescribed trimethoprim, an antibiotic that should never be co-prescribed with methotrexate, which she was taking to treat her arthritis. Taken together, this drug cocktail compromises defence cell production and so she was unable to protect herself against severe infections.

Once again, her critical condition remained unnoticed by staff despite our persistent interventions – my sister is a doctor – and our attempts to beg them to acknowledge the severity of her situation as well as offering to travel to other hospitals to find critical alternative drugs that may have helped and which they said the pharmacy had run out of. My mother never recovered and died a few days later after nearly three months in hospital.

All the medical literature states these two drugs should not be co-prescribed. Yet no one on the medical team picked this up – and nor did the pharmacy. In the report by Addenbrooke's to investigate her death – and in which it accepted responsibility for its litany of errors – it also admitted her medical notes were a mess and the paper-based alert system hadn't worked; it has since instituted new procedures.

Electronic medical records could have saved her life

Now imagine this. If my mother's NHS medical records had been stored on an electronic tablet at the end of her bed, say a tablet that was wired up to a central database – and to the hospital pharmacy – it would have shown immediately that these drugs should not be given together. Or imagine if she had her records on her own tablet, or on an app on her phone – and available to her family – which, after entering hospital, could have been plugged direct into its database?

Today, the technology is available to make any of the above digital connections. The data – our personal electronic medical records – are also technically available and theoretically portable so they could be fed into any device deemed appropriate. Yet the NHS and the UK's hospitals are still light years away from sharing or integrating patient data – whether it's between GP surgeries and their patients, or indeed hospitals and their patients to improve care and, critically, for use in research.

What's worse is the backward-looking attitude that is held by many in the political world about the dangers of sharing data. Take the latest fuss over whether NHS England should allow pharmacies to have data from people's Summary Care Records, which sets out details of prescribed medications on all NHS patients. Not only is the criticism misjudged, it's also ill-informed.

To put the record straight, patients now "own" their own records under the latest Health and Safety Act. That means pharmacists would have to ask for a patient's consent to view their records – and they can opt out of having an SCR kept on them.

New law should make an impact

Giving patients ownership of their data and protecting privacy was pivotal to the new legislation that was championed by George Freeman, the life sciences minister, and which came into force earlier in 2015. Freeman says patients should be reassured their privacy will not be invaded because the law now establishes ultimate control lies with us, the patients, and not the government or the European Union. At the same time, the Data Protection Act protects against misuse.

There are many other areas where data can be shared for the public good. One pioneering project is Health North, a programme being set up by the Northern Health Science Alliance, a new collaboration between universities and hospitals in the north of England to improve life expectancy and overall health in the region.

As part of George Osborne's "Northern Powerhouse" campaign, the NHSA has been given £20m to work on ways of sharing data between public services such as the police and hospitals. Indeed, the alliance is focused on health data and precision medicine; the discipline of understanding who should receive what medicines through the better use of data: two areas that could help patients like my mother.

As it so happens, this story comes full circle. In an interesting turn of events, her grandson, and my son, is Dr Hakim Yadi, the NHSA's chief executive. He explains that the Health North project is aimed at creating environments in the region's cities so local authorities can work better with local hospitals and academic researchers on a number of health issues ranging from improving precision medicine to helping with the mentally ill and domestic abuse victims.

Yadi gives the example of mentally ill patients who are arrested for disturbing the peace and then kept in prison cells, often because the police simply don't know about their condition. But if they had access to the NHS records, they would be able to direct those who have been detained to the right carers.

Data sharing could also be used to inform the services of women who are subject to domestic violence – it has been shown victims of abuse don't speak to doctors about their serious problems because they don't want to show the physical symptoms of their abuse. But if records were shared between the police and GPs, doctors would have access to such information and might be able to treat them.

Facing up to privacy fears

For now, the NHSA's work is still at the early planning stage but you can see the enormous potential for helping even the most invisible is society. I've no doubt that my mother's experience has made me more open to the potential benefits of data transparency and subsequent sharing. That doesn't make me partisan.

Of course, there are genuine concerns that data could be manipulated so the public's privacy must be protected at all costs. But let's also be honest about what we fear. Who do we really think is going to misuse or hold us to ransom over our medical records? Government? Terrorists? I don't think so. Big pharma snake-oil salesmen or other device companies perhaps. But they would find it tough as the pharmaceuticals industry is tightly regulated by the ABPI Code of Practice, and Health Regulatory Authority regulations, and is not allowed to approach directly.

These are early days still for a biomedical revolution that could prove every bit as profound as the agricultural and industrial revolutions and, to be frank, we don't have a clue what the full ramifications of this third revolution may yet throw up. However, there are some certainties: that the public must understand they own their own records, and that they understand this revolution will change healthcare from something that is done to them to something they are more involved with and can challenge.

For its part, the culture within the NHS and the medical profession will have to accept patients will become increasing involved in their own care and so will have to be big enough to let the public into their brave new world and, from my experience, be more open to being challenged too.

Peering into the future, I can see no reason why storing our NHS data – along with information from iPhones and other devices – doesn't become part of our personal library and used in the same way as we use satellites for driving or mobiles for banking or any other activity. And it could save lives.

Margareta Pagano is a business journalist who writes for the Independent and the Financial News. Follow her on Twitter @maggiepagano.