Patient engagement: pull together for a patient-centred NHS

Over the past 10 years we have become accustomed to Professor Sheila Leatherman and Kim Sutherland's periodic assessments of quality of care offered by the English healthcare system. Their analyses, drawn from publicly available data, have developed a reputation for objectivity, clarity and no-nonsense recommendations.

Their latest publication, A Quality Chartbook: patient and public experience in the NHS, is no exception. It should be read by all those committed to improving quality of care.

They start, sensibly, by reminding us what patients and the public say they understand by a 'patient-led NHS'. This includes: wanting information and involvement in decision-making about their care; being treated as an individual; choice where it makes a difference; predictable and convenient access; equitable treatment and outcomes; and being safe and protected from harm in healthcare settings.

Using a wide variety of sources, they present data relevant to each of these priority areas. They show a mixed picture. There have been areas of real success, not least the dramatic improvement in access to care for inpatients, outpatients and in primary care. They note how the vast majority of patients feel they are treated with respect and dignity. They point to systems put in place to deal with adverse events. They also note something we all just take for granted in England; compared with other countries including the US, cost concerns rarely inhibit patients from seeking medical care.

Leatherman and Sutherland give credit where it is due. In the past 10 years, the NHS has 'purposefully developed policies, strategies and initiatives to support, listen to and engage with patients', they write. Yet, inevitably, there are areas where improvements are still needed. They highlight four in particular.

Patient involvement

The first, and perhaps most neglected, is the need for better engagement of patients in decision-making and self-care. Here, international performance drawn from Commonwealth Fund surveys is not good. In UK primary care only 29 per cent of patients reported that their doctor told them about treatment choices and asked their opinion. Australia, Canada and the US were little better. Only in Germany did more than a third of physicians say they routinely provided a written care plan for patients with long-term conditions.

Drawing on the Healthcare Commission's large-scale surveys in England, they show that only half of inpatients and 40 per cent of people with mental health problems were fully involved in decisions about their care. Fewer than half of the inpatients surveyed indicated that danger signals and medication side-effects were explained to them before discharge.

In diabetic care, even though improved self-care is seen as a key intervention to help improve good glycaemic control, only 10 per cent indicated they had participated in education and training programmes. Of those who had not participated, the vast majority had not been offered the opportunity to do so.

The government has acknowledged the need for much better engagement of patients in understanding and taking control of their own care. Shaped by the views expressed by over 140,000 members of the public during a series of listening events and consultations in 2005, the white paper Our Health, Our Care, Our Say recognised that two-thirds of NHS activity relates to the one-third of the population with the highest needs and an estimated 80 per cent of costs.

This, the white paper argued, will have significant resource implications for health and social care, unless we change our current approach: 'Health and care services still do not focus sufficiently on supporting people to understand and take control of their condition at an early stage. As a result resources are wasted, medication goes unused, people's health deteriorates more quickly than it should and quality of life is compromised.'

Hollow rhetoric

Yet little appears to have been done to make the changes necessary since the white paper was published 18 months ago. This is confirmed in a Picker Institute Europe report, Is the NHS Becoming More Patient-centred?, also published this week, which concludes that the NHS is still far from the 'patient-centred' service five years of increased funding and policy reform has promised.

'Patient engagement in decisions has flatlined,' says Picker Institute chief executive Angela Coulter. 'It means the rhetoric of "patient-centredness" has a hollow core' (for more background, click here).

This will be a challenge for the Department of Health. However, it is hoped that the Health Foundation's 'Co-creating Health' initiative will be a beacon to guide policy-makers and the NHS.

The initiative will support eight health economies from across the UK to create new healthcare models that embed self-management within mainstream health services. Two teams will focus on each of the following long-term conditions: musculoskeletal pain, chronic obstructive pulmonary disease, diabetes and depression.

The programme combines an advanced development programme for clinicians to improve their skills in supporting patients to self-manage, and a self-management course for people with long-term conditions, making it easier for them to take a more active role in managing their health.

At the centre of the initiative is a radical shift in the relationship between patients and clinicians, towards a more equal partnership.

The second area highlighted by Leatherman and Sutherland is the need for increased patient safety, in particular prevention of hospital-acquired infections. Here, they point to the growing emphasis placed on patient safety in recent years, spearheaded by chief medical officer Sir Liam Donaldson. They also highlight the importance of the creation of the National Patient Safety Agency and the launch of its reporting system.

There are also positives to be drawn from the charts. UK primary care leads the world in processes to follow up on adverse drug events and there is evidence of falling surgical site infection rates.

However, many aspects of patient safety appear to remain intractable. The frequency with which Clostridium difficile was mentioned as a contributory factor in death has increased dramatically. Comparative MRSA data shows the UK to have one of the highest rates of infection.

This also represents a challenge for a new health secretary. But there is a considerable appetite among clinical and managerial leaders to get to grips with patient safety problems in hospitals. Based on the experience of the Health Foundation's Safer Patients initiative, a Patient Safety Alliance has already been formed in Scotland. Plans for a safety campaign in England have been under discussion for some time and action is required to make these a reality.

Quality deficit

The third area under scrutiny is the need for more predictable access to timely and technologically advanced clinical interventions. Here Leatherman and Sutherland chart dramatic improvements in many waiting times.

However, using data from audits conducted by the Royal College of Radiologists, they reveal that in 2005 over half of patients receiving radical or adjuvant therapy and about a third of those receiving palliative care waited for unacceptably long periods. These results, they say straightforwardly, 'signify a serious quality deficit'.

The fourth is reduced variation in healthcare outcomes such as life expectancy and infant mortality. Here the figures are uniformly poor.

The government has long sought to reduce inequalities in life expectancy, cancer, heart disease and stroke. For life expectancy the specific target is to reduce by at least 10 per cent the relative gap between the bottom fifth of the population and the rest by 2010. Leatherman and Sutherland reveal that, rather than shrinking, the relative gap in life expectancy has grown wider.

The circulatory disease rate for those under 75 in the most deprived areas was 68 per cent higher than in the least deprived. The cancer death rate was 30 per cent higher. Meanwhile, the gap in the infant mortality rate of the best off and the least well-off grew from 13 to 18 per cent between 1997 and 2005.

Alan Johnson declared earlier this month that his principal objectives as health secretary were to improve the health of the nation and ensure the health of the poorest improves the fastest. He told his audience that tackling health inequalities will be central to his department's work and that he believed there were a number of practical interventions that could succeed in this area.

Mr Johnson heralded the publication of a strategy next year setting out what he called 'a bold new work programme'. In the light of Leatherman and Sutherland's data this is going to be a tall order, however well led and well intentioned the health secretary, because of the need to re-consider a wide range of social policies across government.

Engaging patients in the way envisaged by the Co-creating Health initiative may provide one means of helping the NHS contribute to the inequalities agenda.

A Quality Chartbook: patient and public experience in the NHS by S Leatherman and K Sutherland is published by The Health Foundation, 2007. Is the NHS becoming more patient-centred?, Picker Institute Europe, 2007.

www.health.org.uk