Empowering Patients

The NHS continues to be a hugely popular public service, despite its much-publicised failings. Disasters, including atrocious care of elderly patients in certain NHS hospitals, and sensationalist tabloid headlines, have done surprisingly little to shake public trust in the service, which remains high. Yet look beyond the headlines and you find signs of a sluggish response to changing patient needs and expectations and a paternalistic culture that prevails in spite of the rhetoric about ‘no decisions about us without us’.

Both the current government and the previous one sought to address these problems through promoting ‘choice’ and ‘voice’. Encouraging competition between providers (choice) was used alongside patient feedback (voice) in the hope that this would increase responsiveness, improve efficiency and drive up quality.

Choice of provider

Choice policy views patients as consumers who, if armed with information on the quality of care provided by different organisations (hospital or general practice), will shop around for the best. In theory, since payments follow the choices that patients make in a competitive healthcare market, providers should have an incentive to attract them, and the collective act of shopping around should send signals to poor performers to pull their socks up or go under. Fixed national tariffs should ensure that providers compete on quality not price, so quality standards overall should rise. Or so the government hopes.

Critics of this approach claim that it leads to increased privatisation, inefficiencies due to wasteful duplication of services and that it panders to the concerns of a middleclass urban elite, leaving those in less advantaged groups with few options. Barriers to exercising choice of provider might include travel costs, job constraints, communication problems or lower levels of health literacy. And in some remoter areas, the choice of specialist services remains limited or non-existent unless people are willing to travel long distances at their own expense.

More than 10 years after a Labour government first introduced the provider choice policy, it remains difficult to judge whether either its proponents or its critics have been proved right. There is no doubt that the idea of choice is intrinsically attractive to many people. Surveys show that older people, those with lower educational qualifications, and those from non-white or mixed ethnic groups are especially likely to say they value choice.1 But few are willing to spend much time looking for performance data to inform their choices.2 There is some evidence that hospitals in regions where there is a greater number of competing providers have performed better in relation to certain quality indicators, but no one has yet demonstrated that this is the result of an increase in informed choices by individual patients.3

Greater choice and competition may lead to improved care in certain circumstances, for example shopping around for the best provider of common elective surgical procedures might make sense. But most patients are more interested in having a say in how their condition is treated or managed than in choosing hospitals.4

Choice of treatment

There are often many different ways to treat a health problem, each of which may lead to a different set of outcomes. Decisions that can affect people’s quality of life in important ways should not be left to doctors alone. In these cases it is important that patients are informed about the potential benefits and harms of each of the options and encouraged to participate in selecting the best treatment for them.

This process, known as shared decision making, involves the provision of reliable, balanced, evidence-based information outlining treatment options, outcomes and uncertainties, together with decision support counselling with a clinician or health coach to clarify options and patients’ preferences.

This idea finds favour in many quarters. The Department of Health, the General Medical Council and many other bodies have published statements advocating shared decision making and it is one of several important commitments in the NHS constitution. Yet national patient surveys (a feature of the ‘voice’ policy) show that many, if not most, patients do not receive sufficient information to make an informed decision about their treatment or care.5 Clinicians often think they are better at informing and involving patients than they actually are. A very different picture emerges when you ask patients.

It is often assumed that patients who are well-informed about treatment options will choose the most expensive, but in fact the opposite is the case. Well-informed patients tend to be more risk-averse than the clinicians who treat them, often leading to reduced demand for more invasive and expensive procedures when they have access to good information.6 Making evidence-based patient decision aids available and training clinicians in better risk communication could be a highly cost-effective way to empower patients and encourage evidence-based practice.

Choice of care plan

People with long-term conditions constitute 30 per cent of the total population and account for 70 per cent of health and social care expenditure. They are the heaviest users of hospital care, accounting for 70 per cent of hospital bed use, 64 per cent of outpatient appointments, and about 50 per cent of GP consultations. Improving care for these people is the greatest challenge we face if the NHS is to deliver greater value. This means transforming the service from a system that is largely reactive, responding mainly when a person is sick, to one that is much more proactive and preventative, focused on supporting people’s ability to self-manage their health.

People with chronic conditions, those with multiple or complex conditions, including mental health problems, and frail older people nearing the end of life place great value on continuity and on well-coordinated personalised care, delivered by integrated teams of professionals.7

Personalised care planning aims to ensure that patients’ values and concerns shape the way long-term conditions are managed. Instead of focusing on a standard set of disease management processes determined by clinicians, patients are encouraged to select treatment goals and to work with clinicians to determine their specific needs Empowering Patients 29 for treatment and support. In this more collaborative approach, problems are discussed and tackled, including patients’ accounts of the practical, social and emotional effects of their condition on their daily lives. Treatment goals are agreed, management and support options are reviewed, and plans are recorded and shared.

It has been government policy in England since 2010 to ensure that all patients with long-term conditions are actively involved in planning their care, but a coordinated, personalised approach is not yet the norm in everyday practice.8 Effective implementation must involve significant organisational and cultural change, plus determined leadership and effective monitoring. The rewards are potentially great. Encouraging anticipatory care and prevention, better support for self-management and better use of community assets, could create significantly greater value at lower cost than is possible with the current network of reactive services. One estimate suggests this policy could produce savings of about £4.4bn per year if properly implemented.9

An untapped resource

Patients have been described as the greatest untapped resource in healthcare. Recognising their capacity and that of local communities as assets and co-producers of health, not simply resource-users, could do much to transform the quality and sustainability of the NHS. This type of reform does not require further structural change. Instead what’s needed is a shift away from a reactive, disease-focused, fragmented model of care, towards one that is more proactive, holistic and preventative, in which people are encouraged to play a central role in managing their own care.

Policy levers that will be important include: „„

• Incentives for clinicians and commissioning groups to transform traditional consulting styles „„
• More integrated team working „„
• New funding mechanisms and pooled budgets that facilitate co-ordinated care „„
• New types of training courses for health and social care professionals „„
• More flexible and less fragmented commissioning with patient and community involvement „„
• More patient access to electronic records „„
• Better systems for sharing data across service boundaries „„
• And co-ordinated metrics for monitoring progress and outcomes

Endnotes

1. Dixon A, Robertson R, Appleby J, Burge P, Devlin N, Magee H. Patient choice: how patients choose and how providers respond. London: The King’s Fund, 2010.

2. Marshall M, McLoughlin V. How do patients use information on health providers? BMJ. 2010;341:c5272.

3. Gaynor M, Moreno-Serra R, Propper C. Can competition improve outcomes in UK health care? Lessons from the past two decades. Journal of health services research & policy. 2012 Jan;17:49–54. PubMed PMID: WOS:000300804000007. English.

4. Coulter A. Do patients want a choice and does it work? BMJ. 2010;341:c4989.

5. Coulter A, Collins A. Making shared decision-making a reality. London: King’s Fund, 2011.

6. Stacey D, Bennett CL, Barry MJ, Col NF, Eden KB, Holmes- Rovner M, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev. 2011;10:CD001431. PubMed PMID: 21975733. Epub 2011/10/07. eng.

7. Department of Health. Long Term Conditions Compendium of Information 2012 10/11/2012; (Third edition). Available from: http://www.dh.gov.uk/prod_consum_dh/groups/dh_ digitalassets/@dh/@en/documents/digitalasset/dh_134486.pdf.

8. Burt J, Roland M, Paddison C, Reeves D, Campbell J, Abel G, et al. Prevalence and benefits of care plans and care planning for people with long-term conditions in England. Journal of health services research & policy. 2012 Jan;17 Suppl 1:64–71. PubMed PMID: 22315479. Epub 2012/02/15. eng.

9. Morioka S, Farrington S, Hope P, Brett K. The Business Case for People Powered Health. London: NESTA, The Innovation Unit, Private Public Ltd., 2013.