Publication Health and Care 10 February, 2015

Expert patients

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Reform publishes new research exploring how patients can be more engaged in their health and more involved in their healthcare.

The report argues greater patient engagement could both improve outcomes and reduce costs. The exam question facing the NHS at the beginning of the next Parliament is to save £22 billion by 2020-21. According to the NHS England Five Year Forward View, savings at this level will enable the NHS to manage without a deterioration in quality or a demand for emergency funds which, in the current fiscal climate, may not be available. The NHS should embrace patient engagement as a key means to achieve its £22 billion target. In recent years, a considerable range of evidence has shown that patient engagement can improve both outcomes and use of resources. At a time when services are stretched, helping patients to manage their own conditions can reduce demand on traditional services:

  • A review of self care commissioned by the Department of Health found effective interventions can reduce hospital admissions by as much as 50 per cent.
  • The value of informal care, provided by friends and family members, now exceeds the total NHS budget. In social care, the NAO has estimated informalcare is worth £100 billion per year. That compares to local authority spending on care of around £20 billion per year.
  • Shared decision-making and patient decision aids have been proven to reduce the likelihood of invasive surgery, high cost treatments and unnecessary tests.
  • Similarly, conditions such as cancer, respiratory disease and heart disease can be targeted through smoking cessation programmes, improvements to diet and physical activity, and better information.

This report presents four case studies of successful patient engagement:

  • The Vitality programme provides incentives for healthy behaviour in South Africa, the UK and the USA. Members earn “points” for taking part in gym sessions, enrolling in smoking cessation programmes and buying healthy foods in partner supermarkets.
  • Personal health budgets, in the UK and overseas, have led to better health and wellbeing. They improved value for money due to reduced demand for hospital and GP services and better negotiation over prices with providers.
  • Introduced by Kaiser Permanente, Health Connect is an online portal which enables patients to email clinicians, view personal health information, schedule appointments and take online health assessments. Patients have reported greater confidence and success in self-management as a result.
  • PatientsLikeMe is a US-based online community which enables patients to meet others with similar conditions and share their experience. One review found that patients better adhered to medication and needed fewer visits to AE as a result.

The NHS has launched several initiatives to improve patient engagement but the impact has so far been limited:

  • The NHS Constitution was established to drive greater patient engagement yet according to one survey, 76 per cent of patients had not heard of the Constitution before receiving treatment.
  • Only 51 per cent of patients are aware of their right to choice of NHS services.
  • Neither NHS Direct nor 111 have had the “disruptive” effect on the NHS that was hoped for. Relatively few patients use the service and high numbers are consequently referred to either a GP or AE.
  • According to a 2013 survey, 97 per cent of consumers would like access to their electronic health records yet 67 per cent remain unable to do so.


This report estimates that stronger patient engagement could lead to savings of nearly £2 billion by 2020-21, i.e. around 10 per cent of the NHS England target saving. The savings would comprise more self care, improved public health, and greater patient contribution to their care, such as a diabetic measuring their own blood sugar levels.

The £2 billion saving is consistent with the findings of the last landmark government review of NHS funding. Sir Derek Wanless’ review, published in 2002, also found that greater engagement would contribute to lower costs and better outcomes. (Sir Derek Wanless estimated that the NHS would spend around 2 per cent of GDP more under a “fully engaged” scenario compared to a “slow uptake” scenario, or around £30 billion per year by 2022-23. The majority of this saving would come from higher NHS productivity.) More than a decade later, however, improvements to public health remain marginal and in some areas, such as obesity, are in decline. The NHS is now paying the price.

The involvement of private providers in the NHS is controversial for some. However creating an NHS fit for “full engagement” will require the use of outside expertise. Industries such as banking and retail have used technology to put the customer first, such as loyalty cards, and harness the consumer’s own contribution to services, e.g. self-checkout. Leading NHS hospitals are already bringing in private sector expertise to improve customer service. NHS organisations, from hospitals to primary care to commissioners, should go further to bring this outside expertise into the NHS.

Innovators outside the NHS are already giving patients the opportunity to engage in their health and care. Private and third sector organisations are going direct to the consumer to offer services not typically offered by the NHS. Social networking sites such as IWantGreatCare and PatientsLikeMe give patients a forum to give feedback on services, learn from other patients and track their own conditions. Apps such as Babylon are giving patients access to “virtual” primary care. These disruptors will help the “expert patient” to emerge more quickly outside the NHS than from within.