It’s not about the money; it’s not about the technology; it’s not about the data. It’s about the culture. That could be a summary of the NHS Future Forum’s work on information last autumn, writes information worksteam co-chair Jeremy Taylor.
The forum conducted our work in the shadow of three information revolutions: the promised governmental revolution of increased transparency and choice; the continuing digital and technological revolution; and the emerging social media revolution.
The landscape of “information” is vast and there was no shortage of distractions for our workstream: political (big P and little p), technocratic, and technological. So we kept our focus on one overriding question: “what changes will make the biggest improvements in care”?
We spoke to as many people as we could in our few weeks of intensive listening, dialogue and reflection: patients, service-users, health and care charities, clinicians, managers, informatics specialists, suppliers and more. It was in these exchanges that the question of culture loomed large.
From patients, carers and their representatives we heard that people want information in the context of a dialogue: about their health, their treatment options, about “what happens next” and the implications of their condition for how they manage their life.
People said they don’t want to be swamped with data; they want timely, relevant information, explanation and a conversation. The hospital discharge summary needs to be copied to the patient and their nominated carer at the point of discharge, not weeks later. Many people need guidance, emotional support and advocacy. People who don’t speak English need access to interpretation services. And people don’t just want to be on the receiving end. It’s a two way process: asking questions, expressing preferences, giving feedback, talking to “patients like me”.
The message was clear: information is communication, and communication needs to be treated as an integral part of the service. Like medicine, information can heal, but poor information, poorly handled, can harm and even kill. Modern technology helps but in some ways is beside the point. For example, women have kept their hand held maternity notes for years. Why? Because there is a will to communicate, share and involve. Culture, not technology.
As well as information for patients and users of services, many people engaged us in the issue of information about the patient. From just about every perspective we heard a chorus of exasperation at the inability of care systems to capture and share relevant data about individuals in the interests of their care.
GPs and nursing homes needed to know what happened to the patient when in hospital, but often struggled to find out; hospital doctors were driven to distraction by systems that made it difficult to enter and retrieve clinical information at the point of care; patients were fed up having to repeat their histories to every clinician they saw; carers often felt left in the dark.
These were not simply petty frustrations. It was put to us strongly that the failure to share patient data effectively is an impediment to continuity of care; a risk to safety and quality; and is sometimes fatal. It was clear that the aspiration of a shared electronic record remains valid even if the National Programme has failed to deliver it.
We heard three stories which helped to explain why the vision of a shared patient record had not yet come to pass. Characteristically, each of these was a culture story. The first was a history of the National Programme for IT (or more accurately some aspects of it): an object lesson in one-size-fits-all, central government top-downery of the style that is now fully discredited (if not yet fully abandoned).
Clearly many people were still scarred by the experience. It had left NHS managers reluctant to trust governmental IT initiatives, while in many cases not fully trusting their own judgement to get on with things.
The second story was a description of the battlefield after the tanks of the National Programme had departed. A bleak landscape of chaotic paper records, arduous and purposeless data collection; computer systems unable to talk to each other; and a spirit of resignation and helplessness in the face of all this disorder.
The third story was about information governance. Repeatedly we heard that the way the rules on governance were interpreted and applied was dysfunctional. “The default position of the Caldicott Guardian is no”, was how one contributor summed this up.
The mindset of those making decisions about information governance often seems to be “we cannot take the risk of sharing these data” rather than “we cannot take the risk of not sharing these data”. Indeed, the governance regime does not even seem to succeed in its own terms, since personally identifiable data are routinely moved around the system without informed consent, and also go missing to an extent that has alarmed the information commissioner.
Alongside these stories of obstacles to progress, we heard many cases of people and organisations successfully overcoming the hurdles to ensure that information could be collected, shared and used effectively to improve patient care and drive up quality.
For example we looked at the joined up IT systems at University Hospitals Birmingham, the online portal Renal Patient View, and the pioneering work of doctors such as Richard Fitton, Amir Hannan and Brian Fisher to give patients online access to their health records. We looked at the work of charities like Macmillan and the Stroke Association to support patients, and websites like Patient Opinion. It was put to us that by international standards, the UK is in some ways an exemplar in the use of information and that “the future is already here, just not evenly distributed”.
The common elements in these success examples are also the ingredients that in the end will determine whether the information revolution delivers for patients and citizens or remains a slogan. What are these ingredients? Strong local leadership; an impatience for improvement; smartness in making limited resources go a long way; and above all a focus on the patient. Culture and mindset, not technology.