Personal responsibility for health and healthcare

Today it seems wherever you turn, you are being exhorted to be responsible - drink responsibly, drive responsibly, be a responsible consumer. But what does it mean to be responsible? We would probably class someone who is moderate in their consumption of alcohol as a responsible drinker. The suggestion being that getting drunk is irresponsible primarily because it is damaging to one's health but also because one is more vulnerable to violent or sexual attack - the message of a current government alcohol awareness campaigns (www.knowyourlimits.gov.uk). A responsible driver is someone who doesn't drink and drive, does not drive excessively fast or when tired, wears a seatbelt and doesn't use a mobile phone (www.thinkroadsafety.gov.uk). In addition from an environmental perspective, someone who drives a small, fuel-efficient vehicle. Here the issue is less about the impact on oneself but on others. The focus is on the negative externalities of irresponsible driving such as death or injury to other road users or the impact of increased carbon emissions on the climate. Finally, responsible consumerism means taking into account health, human and animal welfare, environment and fair trade issues when making consumption decisions. It can mean buying low salt/fat, organic, free range, fair trade or recycled products, reducing food miles or one's carbon footprint, refusing to buy clothes manufactured in sweat shops where workers' rights are abused, or plastic bags. It seems then responsibility is about being personally accountable for the impact of your actions both on yourself and on others.

There is a growing interest in making people responsible for their health and healthcare. This can take a number of guises and raises both ethical and practical issues which policy makers keen to promote personal responsibility will need to address.

Responsibility for one's health

As with responsible drinkers, personal responsibility in this sense is about making consumption decisions and lifestyle choices that have a positive impact on one's health and avoiding products that are damaging to health. If one were to follow government advice and health warnings, a responsible person would eat a balanced healthy diet including at least five portions of fresh fruit and vegetables, eat less than 6g of salt, drink less than two to three units of alcohol for women (three to four units for men), would not smoke, and would take at least 30 minutes' moderate physical exercise per day.

Sir Derek Wanless in his original report for the Treasury securing Our Future Health: Taking a longterm view (2002), envisaged a scenario in which the population would be fully engaged in their health.1 In a second report securing Good Health for the Whole Population (2004) Sir Derek set out what he thought was needed to secure the improvements in public health.2 He advocated a significant role for government in promoting public health. A recent assessment of progress against these original projections reports that while smoking levels are falling, obesity rates have risen. The prevalence of obese adults increased by 51 per cent between 1995-2005 among adult men and 42 per cent among women. In 2005 18 per cent of children were classed as obese, an increase from 11 and 12 per cent respectively for boys and girls.3

In debates about how to tackle public health problems, personal responsibility is often set up in opposition to state responsibility. The classic argument is between those who support the use of taxes and regulation by the state and those who see this as interference by the 'nanny state'.4 The government appears to prefer the idea of 'libertarian paternalism', that is where the government sets default options but allows people to opt for alternatives.5 The public health White Paper Choosing Health signalled a change in approach from a focus on tackling the wider determinants of health set out in Tackling Health Inequalities: A Programme for Action6 to one much more focused on creating an enabling environment in which the right choices are made the easy choices.

There are a range of policies which a government might consider to encourage greater personal responsibility ranging from draconian ideas such as making individuals bear financial responsibility for the conseguences of unhealthy lifestyle choices to those that are more facilitative such as providing free access to exercise facilities on prescription.

The emphasis on the responsibility of individuals for their health, can diminish the responsibility of other actors be they state, industry, community or family. The failure to halt the epidemic of obesity suggests that environmental, ecological and social factors are very strong and are not easily countered by policies that solely focus on individual knowledge and motivations. Furthermore growing health inequalities suggest that some sections of the population find it easier to 'engage' in their health than others.

Responsible use of healthcare

It is a commonly heard criticism (often from staff working in the NHS) that people waste NHS resources. Patients are accused of attending A&E with minor injuries that could be dealt with elsewhere, or bothering the GP with minor ailments that could be treated at home or with advice from the pharmacist, or simply not turning up for appointments. Such people are seen as irresponsible because the NHS's limited resources could have been used to treat others.

The argument that follows, mainly put forward by proponents of increased private funding, is that such abuse is because the NHS is free to patients and they are unaware of the costs of their decisions. Patients should therefore have to pay a proportion of the costs. The example of France where in the ambulatory sector patients first pay their doctor and then reclaim a proportion of the costs from their insurance fund is cited as an example which the NHS should follow.7 However, it is not clear that the French are frugal in their consumption of health services as a result. In fact those who can afford to do so buy supplementary insurance to cover the costs of out-of-pocket payments, so in effect care is free. Other ideas from the same stable include fining people for not attending appointments,8 charging people for attending Accident and Emergency (A&E) with minor problems, or issuing a statement of the amount of money spent by the NHS. These so-called demand-side cost control methods have been shown to be a blunt instrument for deterring inappropriate or unnecessary care. There is an extensive literature which demonstrates that copayments and co-insurance are regressive, impacting more on those with low incomes and do not contribute overall to expenditure control.9

In the US the introduction of medical savings accounts in 1996 and the subsequent use of health savings accounts or health reimbursement accounts as part of so-called consumer directed health plans have shifted financial responsibility firmly onto the consumer/patient. While in the NHS financial responsibility for healthcare lies with the state (or rather taxpayers) in the US private insurance market it lies with individuals and their employers.

If we want patients to make more responsible use of health services, the answer is not to put in place financial barriers which shift financial responsibility to patients or use price as a means to direct consumption. This will deter or delay appropriate use of health services particularly among those who most need it resulting in worse outcomes and higher costs in the long run. The majority of people when asked will have a reasonable explanation as to why they have accessed services in the way they have. Many factors will shape health-seeking behaviour such as convenience of access, belief that they will get a better service, lack of confidence in other professional advice or their own judgement, difficulties of transport, perceptions of severity or seriousness of the situation. While professional opinion might judge that someone's injuries or illness could have been dealt with effectively elsewhere, it is often difficult for a patient to self-triage and decide where it is most appropriate to seek care. Recognising this, some hospitals are co-locating primary care and minor injuries services with A&E.

Despite claims to be comprehensive, there are exclusions from the NHS for which individuals are financially responsible. The introduction of copayments for prescription drugs, glasses and dental treatment in 1952 was the first example of explicit rationing. But care is rationed in more subtle ways, such as waiting times10; consequently those who can afford to do so pay privately and may get seen quicker. Other services that people consume for their health, such as over-the-counter medicines and complementary healthcare are paid in full out of pocket. Increasingly people are responsible for the costs of adult dental care, optical services, physiotherapy and long-term care. A recent report suggested that an NHS benefits package needed to be defined because people want to know more explicitly what aspects of health and social care are their personal responsibility so they can make plans.11

While it is probably true that many patients could be dealt with effectively and efficiently in other settings, the reasons why people seek care when and where they do are poorly understood. If people are to make more 'responsible' use of health services, either there needs to be improved public education so people are more aware of the different range of services and when and where to access them or services need to be designed that are more responsive to the demands of patients and in line with their beliefs about where to seek care in different circumstances.

Responsibility for healthcare

Recent political speeches suggest that there will be a renewed focus on personalising health services. Gordon Brown told the Labour Party Conference in September 2007 Our great ambition now: a National Health Service that is also a personal health service'.'2 There has long been a desire that the NHS be more 'patient centred', personalisation is simply a new name for an old idea. In essence underlying all these policies is the aim of putting greater responsibility for healthcare decisions in the hands of patients. These decisions include decisions about where and when to be treated and by whom, decisions about treatment options and care packages, and decisions relating to the management of a long-term condition. In each of these, shifting the decision-making responsibility to patients requires new skills and changes the dynamic of the clinician-patient relationship.

In the English NHS, GPs have traditionally acted as agents for patients when deciding where they should be treated and by whom. In some situations these decisions would be openly discussed with patients, but more often than not a GP would simply make the decision on the patient's behalf unless the patient expressed a strong preference for a different provider. The GP's decision would be made using soft information about the quality of different consultants based on personal contact with the consultant, feedback from other patients they referred in the past, or colleagues' recommendations. Since the introduction of the internal market in the 1990s GPs' freedom to refer to any NHS provider has been constrained to some extent by the contracts held by health authorities, and subsequently Primary Care Trusts with providers. With the introduction of patient choice at the point of referral for specialist opinion, GPs are required to offer patients a choice of where to be referred. In the most recent representative national survey of patient choice, conducted in March 2007, 48 per cent of patients recalled having been offered a choice, up from 30 per cent in 2006.13 At present the choice offered is between different hospitals rather than choice of a particular consultant. The system of electronic booking which has been introduced to support choice of provider also allows patients to choose a time and date that are convenient to them rather than being allocated an appointment by the hospital. It is expected that this will reduce non attendance rates for outpatient appointments.

Alongside the booking system, a revamped website has been launched called NHS Choices, which brings together information on providers (previously on nhs.uk) and health information (from NHS Direct online). It is anticipated that further information about providers will be added in future updates including patient ratings and feedback.

It is not clear at present whether patients want to take on the responsibility for deciding where to be treated. Research into the factors that are important to patients when choosing a provider suggest that waiting times and the recommendation of the GP play a major role.14 It is possible that many patients will defer to the GP rather than take responsibility for weighing up the publicly available information on providers. Evidence from experimental studies elsewhere suggests that when presented with comparative quality information many people find the information difficult to interpret, particularly those with low numeracy and literacy skills.15

Patients are currently faced with a set of four or five options. From April 2008, patients will be free to chose from all registered providers. Psychology research suggests that faced with too many choices patients are overwhelmed, the cognitive burden and time costs may simply mean patients take the default option (probably the nearest hospital).

Most people when asked prefer to be involved in decisions about their treatment. Few, however, wish to take full responsibility for such decisions.16 While there are consequences associated with choosing a 'bad' provider, the consequences of choosing the wrong treatment are usually more serious. In order to avoid decision regret patients may wish to delegate decisions to a professional. Revised informed consent guidance issued by the General Medical Council, makes it clear that it is the responsibility of doctors to discuss fully the risks and benefits of a test or treatment but also of alternative treatment options including no treatment.17 So while it is possible, indeed desirable, for patients to make shared decisions with professionals it is not possible to derogate this responsibility completely. The Foundation for Informed Decision Making in the US has pioneered work on developing decision aids for patients which explore in more depth than is possible in a time-limited consultation the risks and benefits of different treatment options. Using a combination of video clips of patient narratives, value elicitation tools, and animation, the aids convey factual information about what the procedure involves, and tailored risk/benefit information based on the best available clinical evidence. While these aids are not a substitute for face to face consultations, they can provide valuable support for patients in taking greater responsibility for decisions about their treatment. Decision aids of this sort are particularly appropriate for episodic care where there are discrete derision points such as elective surgery. For patients with chronic diseases management of their condition often involves daily decisions.

There is now a considerable evidence base that suggests effective self management of chronic conditions is essential to improved outcomes (and reduced utilisation of health services).18 People with chronic diseases already take responsibility for managing their condition - on average over the course of a year they have little contact with a health professional. There are currently a number of initiatives under way to develop and evaluate self management support for people with chronic conditions:

* the Expert Patient Programme runs a series of courses nationwide that are designed to improve people's self-confidence to manage; the Department of Health is funding three demon

* stration sites using tele-health and tele-care to improve outcomes for people with chronic/longterm conditions;

* and the Health Foundation is funding eight sites as part of a programme called Co-Creating Health.

Further research is needed to in order to understand which support interventions are the most effective and for whom.

There are also pilots exploring the potential of extending the use of direct payments and individual budgets. These provide patients with money so that they can commission their own care packages. Introduced initially in social care and particularly popular for adults and children with physical disabilities, they shift the responsibility for 'commissioning' care on to patients.

Discussion

Current health policies seek to shift responsibility to individuals for their health and healthcare. In public health, the shift is primarily from the state to individuals and families. While there is potential to develop better targeted interventions to support individuals to make changes to their health behaviours, the government would be short-sighted to overlook the importance of regulation and subsidies. The ban on smoking in public places, taxes on cigarettes and alcohol, food standards and labelling help shape an environment in which healthy choices are made easier. While it is right to encourage and support individuals to take responsible decisions that benefit their health and wellbeing, it is important to acknowledge that for some people there are good reasons why they do not. A more sophisticated understanding of the complex social and psychological factors that influence people's behaviour is necessary if we are to encourage more people to take responsible health decisions.

In healthcare patients are being asked to become more responsible consumers, making appropriate use of health services. This requires education but also the organisation and design of services so that they fit people's health-seeking behaviours rather than the demarcations that necessarily make sense to professionals. Caution should be taken before introducing financial incentives or penalties to drive responsible consumption of healthcare services. These may put up barriers deterring appropriate use of services, particularly by those from low-income groups.

The increase in life expectancy means that the prevalence of chronic and age related illnesses is increasing. For these patients, healthcare in future will be coproduced by professionals and patients. This will demand new skills and roles. Ensuring that people have the skills, knowledge and confidence to self manage their condition effectively will be vital to achieving good outcomes. It must also be recognised however, that there will be times when due to illness, pain or other circumstances individuals will not wish to bear these responsibilities. At these times healthcare professionals, family members or carers will have to share the responsibilities. Technology, information and support, such as decision aids and monitoring devices, web resources and peer support groups, need to be available to patients if they are to take on greater responsibility for their health, healthcare and medical conditions.

The views expressed in this article are those of the author and do not necessarily represent the views of the King's Fund. Thanks to Jo Maybin for research assistance with the article.