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24 November 2018updated 08 Sep 2021 6:56am

In a truly connected NHS, data can thrive

No one should have the stress of managing their own medical history, and better use of data can help.  

By Sarah Wilkinson

Annabelle, an energetic, determined and highly competent professional in her 40s, has terminal cancer. She is seeing multiple doctors across multiple care settings as she tries a wide range of interventions to extend her time with her family. In approximately half of the conversations with her doctors and carers she provides them with details of guidance and medication provided by her other doctors – information they can’t access quickly and easily other than through her. 

She has this information impeccably collated in folders she carries everywhere. She is always the first to identify and help resolve inconsistencies in guidance. She spends hours contacting medical secretaries and records departments to obtain details of test results and consultations and the letters, forms and faxes that document her incredibly difficult medical journey. Annabelle is a good friend and I watch as this process adds daily to the exhaustion of her condition over the final few years of her life. 

The NHS is a large, federated system, in which there are many providers. The system is designed such that specialist providers collaborate to create a set of services that, in aggregate, protect and restore health to whatever extent is possible. Annabelle’s journey began with, and remained anchored to, her GP. She also saw doctors at two hospitals and another doctor privately. In her final months she was in a hospice and, for a few days, in a third hospital. Despite the fact that almost any complex medical journey is likely to require multiple parts of the NHS to work together, as the system has been digitised over recent decades the technology has not been designed to support these interconnections. It’s a huge design flaw. 

In recent years the problem has worsened. There has been increased digitisation, but in the years following the failed National Programme for IT, as the centre rightly stepped away from the misguided ambition to provide large centralised national systems, and local providers made local technology choices, the critical function of national orchestration was lost. 

We now have a hugely heterogeneous technology environment in the NHS. And whilst some providers have become true digital exemplars, others remain reliant on paper. Some have rigorous quality, security and safety controls over data, algorithms and systems. Others do not. And, with disturbing consequences for Annabelle and so many others, systems don’t talk to each other. Information does not move safely and efficiently between different parts of the system. 

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Making embedded and highly disparate systems interoperate is a genuinely complex problem. It’s a bit like deciding to lay down a national rail network after allowing hundreds of individual train companies to design rolling stock of any dimension and specification. Everyone understands the importance of getting data from A to B in the system. Indeed, there have been multiple interoperability programmes underway across the system for many years as people have sought to address this issue, but the necessary programmes of work are so long and difficult and expensive that they often make slow progress, they often falter and some simply fail.

But 70 years of unstinting service has made the NHS a resilient creature. Across the system there are phenomenal people collaborating every day to solve seemingly intractable problems, and they are coming together with a renewed zeal to address interoperability. Our Secretary of State has provided the impassioned leadership necessary for an undertaking of this scale and has made clear his intent to provide sustained sponsorship and support. There isn’t a technologist or clinician across the system who doesn’t want to see progress on this. 

Enthusiasm, passion and commitment are necessary but insufficient conditions for success. We also need a technically rigorous and carefully planned new approach to this work. One of our first challenges is to identify which inter-system connections are our highest priority. We’re working through networks and partnerships to build consensus on this. We then need to define very clear measures of success that can be tracked over time. Technology teams within provider organisations across the system will need to report rigorously on their capability and progress against more clearly defined technical targets. 

Detailed design specification for new, standardised interfaces will need to be developed, with the specific circumstances and challenges of individual providers assessed in detail so that plans to migrate to new standards are sensible and achievable. The national critical infrastructure delivery teams within NHS Digital must set the pace.

Critically, deep technical expertise must be brought to bear. We need to bring our top technical talent together from across the country, augment them with the brightest and best external partners and deploy them at the coalface, alongside local technical teams, to design solutions for the multiple unique challenges that will arise within local system architectures, identifying and deploying reusable patterns.

The NHS’s “Getting it Right First Time” (GIRFT) programme has been hugely successful in reducing the levels of unwarranted variations in clinical outcomes by measuring performance, identifying and communicating best practice, and taking deep expertise to the front line to provide guidance and partnership. In doing so they have made progress on a problem that seemed intractable for a long time. We are about to do the same with technical interoperability. 

This will be a marathon, not a sprint. Persistence, tenacity and commitment over multiple years will be necessary, and very clear ongoing communication of progress will be critical to sustain the spirit and the ambition. In future years, patients will be able to rest confident in the knowledge that their records will move seamlessly between providers and their clinicians will have complete visibility of their journey through the system. Their care will be safer and more efficient as a result. And no patient will have to bear the anxiety of managing the communication of their medical records on top of the anxiety of illness. 

Sarah Wilkinson is chief executive at NHS Digital.