Our new Heath Secretary, Matt Hancock, owns up to being a technology enthusiast and he is already pushing some technology ideas even though the knees of his trousers can have barely touched the underside of his desk.
I often refer to the lessons of the past. Where technology in the NHS is concerned the lesson of NPfIT needs to come to mind. This was the ambition of connecting all NHS patient records and making them available on demand in every GP practice and every hospital. The National Programme for IT started in the early 2000s and was cancelled by the incoming Coalition government in 2010 by which time, a later parliamentary analysis showed, it had cost over £12bn.
What were the lessons?
It was a simple ambition. However no-one could specify it and the core principle for developing a big IT system is that there must be a specification. Technical requirements regularly changed, contractors came and went, some were sacked, enthusiasm grew, cost extensions were agreed by Ministers unquestioned because the ambition was so good. It was all top-down. A few sample GPs were asked what they needed to do their job effectively. Patients were not asked about having all their clinical data gathered together, they were told what was planned and asked to agree (I went to one of those meetings). Voices raising concerns about data privacy were not listened to. Voices raising concerns about the ability of the IT industry to deliver the scale of ambition were just scare-mongers – even though some of them had impeccable IT credentials.
Today’s IT implementations are dominated by apps and small computers (also known as smartphones). It is about putting “information in the hands of the people”. If they use it – success; if they don’t – failure. Costs are minimal and there seems to be a queue of potential providers willing to invest. So what’s wrong with that?
Nothing, if some underlying principles are observed.
First principle – specification. Any app which the NHS agrees to use must have an agreed specification with data portability and security probably top of the list.
Second principle – implications, which will be derived from an independent impact assessment. At the top of the list is clinical safety. And then there are the structural issues. For example an app aimed at working 20-35 years olds in a local area could change behaviour patterns and affect resourcing. Provision of those services to other age groups may deteriorate. Success can be more damaging than failure, it may create demands on the NHS which are difficult and costly to meet.
Third principle – patient involvement. This is less about “will patients use it?” and more about understanding the issues which patients will face while they are using it and having used it. This avoids ‘top-down’ thinking. An ongoing patient group (not a one-off meeting) which actively questions the developer should be an important pre-requisite for NHS approval.
Fourth – the rare situation. Anything clinical, relevant to the app, must be dealt with. It is no good having a remote GP system which fails to investigate a possible sarcoma, and it is no good triggering an investigation and overloading the NHS when a clinical examination (which cannot be done by an app) might deliver a diagnosis. This kind of situation is not uncommon and is not limited to diagnostic work. So called artificial intelligence can offer a lot but it is not the answer to everything – it has no hands.
Fifth – beware the hype. Anyone predicting cost savings in a marketing presentation is talking rubbish. There may well be savings but they will take time to deliver and will not reach anywhere near the scale that enthusiasts predict. Similarly anyone predicting volumes of take-up without having patients already advising them is talking through their hat.
Sixth – sustainability. Do not deal with anyone who has no certainty of being able to deliver their service in two or three years time. Anyone coming into health provision in this kind of way must be able to deliver over time.
Having a list like this might seem like building bureaucratic hoops for an entrepreneurial app developer to jump through. But, think hard. Every one of these points is about the patient. It is not in the patient interest for any of these points to be avoided. It may be that enthusiasm and opportunity seem dominant for an enterprising Health Secretary but patients are at the heart of this.
Matt Hancock may be seeking a culture shift in the NHS towards greater use of small and large IT systems which can resolve some of the gaps in NHS service provision, open up new opportunities, and improve patient experience and the outcomes of treatment. However you cannot ‘put the patient at the centre’ of what you are doing if you do not involve patients in that development.
Involvement is not a single person, not a single meeting, not a presentation to a group. It is about active and ongoing engagement which allows patients to listen and understand, then relate their personal experience and the experience of others from whom they have learned, to a proposed development, to consider implications, to engage in conversations, to visualise, to use their common sense natural abilities to help deliver something which can benefit other patients.