Comment Blog 13 October, 2023

Sustaining the NHS through patient activation

Richard Smith
Former Editor, British Medical Journal

The answer to sustaining the NHS lies outside hospitals and doctor’s surgeries, with patients, communities, relationships, compassion, and love, all of which are available in abundance.

Around the turn of the century, the then Chancellor, Gordon Brown asked Derek Wanless to lead a review of “the long-term trends affecting the health service in the UK.” The real question was how the NHS could be kept affordable.

The report used scenario planning as its main method to answer the question. The scenarios revolved around the level of engagement of people with their health. In the slow uptake scenario “there is no change in the level of public engagement…health status of the population is constant or deteriorates.” There would be “low rates of technology uptake and low productivity.” In the solid progress scenario “people become more engaged in relation to their health,” while under the fully engaged scenario “levels of public engagement in relation to their health are high,” and the NHS has “high rates of technology uptake, particularly in relation to disease prevention.”

By 2017-18 the report estimated that NHS expenditure (in 2002-2003 prices) would be £155 billion under the slow uptake scenario, £141 billion with solid progress, and £137 billion under the fully engaged scenario. The degree of engagement would make a difference of £18 billion, around 13% of total NHS expenditure. In fact, expenditure was £108 billion (about £150 billion in 2017 prices), and the strain on the NHS is considerable.

Yet even current spending on the NHS comes at the expense of almost all other public services. Expenditure on health care in Britain has risen from 25% of public expenditure to 40% in the last two decades.

I don’t know of an agreed measure of public engagement with their health, but it’s hard to see that current engagement is any better than with the slow progress scenario envisaged by Wanless; and there has been slow uptake of technology and even a decline in productivity.

I want to tell a story of how technology can help tackle the twin challenges of low patient engagement and flagging productivity.

In 2009 I became the chair of Patients Know Best, a start-up founded by Mohammad Al-Ubaydli who had a vision of giving all citizens not only access but also control of all their records from hospitals, general practice, community services, mental health, and social care. He recognised that the one thing that links a fragmented system and multiple parties is the patient. The deeper vision was to shift power from the NHS to citizens, enabling them to recognise the reality that they have more influence on their health than does a health care system designed primarily to respond to disease.

If you have meningitis, how well you do will be determined primarily by a clinical team. But for every patient with meningitis there are tens of thousands with diabetes, arthritis, inflammatory bowel disease, hypertension, and other chronic diseases. How well those patients will do is determined more by what they and their families do than by any clinical team. And citizens have far more influence than the NHS on whether they develop these conditions and become patients.

The vision of giving patients access to and control of all their records seemed obvious to me. Why should data that mattered more to me than anybody else be scattered through multiple systems (some of them paper) and inaccessible to me? But what might seem a simple shift represented a technical, organizational, business – and most of all – cultural challenge. Citizens, patients, doctors, and politicians had all come to think that health was a matter primarily for the NHS.

The road to giving patients access to and control of all their data has been long and turbulent and is far from complete, but Patients Know Best now has contracts to serve 15 million NHS patients. Patients have to be registered with the system, which requires correct identification and consent. Initially this depended on clinicians and happened only slowly as clinicians had limited time and didn’t see obvious benefit. Now patients can register through the NHS App, but patients having access to all their data requires integrating dozens of systems.

In addition,  those who currently control the systems mut be comfortable with providing access to data, including ideally test results, and with information governance arrangements. It is a big change, and hospitals and practices have been slow. Nevertheless, parts of the NHS, including in North West London, have made the change and found benefits and few problems. Unsurprisingly, patients who register and find no content in their records (because links have not been made) become frustrated.

Almost 2.5 million patients are now registered with Patients Know Best, and 3 million test results are sent to patients every week. The challenge is to move from simply complying with strictures to give patients access, to engaging and activating patients. Activated patients are those who recognise the power they have over their health, take charge of much of their care, and share data – perhaps by completing questionnaires or through providing physiological measures – with clinicians. Many other apps and technologies can link with Patients Know Best.

Benefits to patients, clinicians, the NHS, and the environment can come from online consultation, but bigger benefits come from reshaping clinical pathways with patients taking more responsibility. An example is provided by changing the clinical pathway of patients with inflammatory bowel disease as happened in Surrey and Sussex Hospital with an innovation led by consultant gastroenterologist, Azhar Ansari.(5)

Inflammatory bowel disease, like most long-term conditions, comes and goes. Patients may be well for long periods of time but then become seriously ill. The usual system is for patients to be seen in outpatient clinics every six months, which means that most of the patients seen in a clinic will be well. Ansari realised that patients who are well don’t need to be seen face-to-face, freeing up time for patients who are becoming sick to be seen as quickly as possible. Using Patients Know Best, patients could see information on the condition and test results, record their symptoms, and communicate with the hospital team. They were not seen if they were well but could be seen more quickly when they developed symptoms.

Some 700 of the 4,000 patients used the system, and a published evaluation showed that in 2015 there were 4,358 non-face-to-face interactions, 440 fewer outpatient appointments, 134 fewer emergency department visits, and 80 fewer hospital admissions. Furthermore, patients who became sick were seen within a week rather than within six weeks. There was no evidence of patient safety being compromised.

This model of care could potentially improve the care of patients with other long-term conditions, and such patients account for most of the work and the costs of the NHS and other health systems. Many other changes are possible. Patients who feel empowered by changed attitudes, technology, and pathways can improve their health and help sustain the NHS, and citizens feeling empowered can achieve even more.

Richard Smith is the unpaid chair of Patients Know Best. He has equity in the company.