Personalization – most often understood in terms of granting patients greater opportunity to participate in, and make choices about, the services they receive – has become a key principle guiding reform of the English NHS.
Personalization – most often understood in terms of granting patients greater opportunity to participate in, and make choices about, the services they receive – has become a key principle guiding reform of the English NHS.
This study sets out to explore the relationship between two senses of the term ‘personal’ within the context of personalization. Firstly, much of the policy literature equates a ‘personal’ service with one that is responsive to the choices of individual patients. Secondly, the term ‘personal’ can be thought to refer to the intimate relationships between patients and medical professionals that have typified traditional models of good practice.
I combine a review of the relevant academic and policy literature on personalization with a process of conceptual analysis to uncover three arguments, which suggest that personalization based on choice may adversely affect standards of care by eroding the qualities of intimacy at the heart of the care process. Thus, an unintended consequence of the drive for personalization may be the creation of an NHS that is, in an important sense, less personal than it once was.
Whilst personalization may deliver many potential benefits, the tension between promoting patient choice and retaining intimate professional-patient relationships ought to be taken seriously. Thus, the task of promoting choice whilst retaining intimacy represents a key policy challenge for advocates of personalization.
Contemporary debate surrounding the reform of the NHS is awash with talk of providing patients with ‘personalized’ care. This study considers two different meanings of the term ‘personal’ in the context of the provision of health-care services in England: firstly, that associated with granting patients greater independence from professionals by tailoring services to the individual patient according to the choices they make, and secondly, that which refers to the intimate relationship between patients and health professionals. In this study, I consider arguments which suggest that attempts to personalize the NHS by promoting greater patient independence through choice may end up eroding the intimate relationships at the heart of medical practice, thereby creating an NHS, which, in an important sense, risks becoming far less personal.
In section I, I examine the sense in which ‘personal’ is taken to support the creation of services, which are individually ‘owned’ by or tailored for patients through calls for greater patient choice over NHS. After briefly outlining some of the reasons behind personalization's emergence as the dominant strategy for reforming public health-care services, I highlight the central role that choice has been given in the Coalition government's plans for creating a personalized NHS, particularly through their plans to make personal budgets and direct payments more widely available for patients with chronic and long-term conditions. In section II, I explore an alternative sense of the term ‘personal’ in the context of health care, that which refers to the intimate relationships between patients and medical practitioners inherent to traditional conceptions of good practice. In section III, I examine the possible tension between these two different senses of ‘personal’ by considering three arguments that suggest that greater patient choice may adversely affect the standard of care patients receive by eroding the culture of intimacy within the NHS. I conclude my analysis by suggesting that though the provision of greater patient independence through choice and the retention of intimacy ought not to be thought of as mutually exclusive goals for the NHS, the tension between these two ought to be taken seriously. The challenge for advocates of personalization will therefore be to create a personalized NHS that is able to accommodate greater patient choice without overlooking or eroding the intimate relationships that lie at the heart of good medical practice.
The first sense of ‘personal’ I wish to consider refers to policy proposals that seek to create health-care services, which are responsive to the specific agendas of individual patients. The so-called ‘personalization’ of NHS involves adopting a ‘patient-centred’ approach, which is responsive to the requirements of individuals, in contrast to services that cater for groups or populations by fitting patients around the operational and institutional requirements of medical professionals.
At its core, the personalization of health-care services involves providing patients with greater opportunity to participate in and make choices about the medical services they receive. Despite the term's wide variety of potential meanings and applications, advocates of personalization are united by a desire to replace traditional services – typified as those which involve monolithic institutions delivering uniform, ‘one-size-fits-all’ services across the board – with systems that are able to tailor services to fit the particular requirements and circumstances of each individual service user.[1, 2] Within health care, the key means of achieving this is by providing patients with greater opportunity to participate in the planning, delivery and evaluation of the services they receive. Indeed, advocates of personalization stress, the need to create an environment in which patients are actively involved in ‘co-producing’ better health outcomes rather than passively relying on medical professionals to deliver it for them. The literature that presents personalization thus places a strong emphasis on allowing patients greater control over services, and this is most often expressed in terms of providing patients with a greater degree of choice. Indeed, as the Darzi review of 2008 makes clear, greater patient choice is an essential ingredient of personalization:
‘We believe that choice should become a defining feature of the service. A health service without freedom of choice is not personalised. So the right to choice will now be part of the NHS Constitution, ensuring that people become more clearly aware of it.’  (P. 38)
Political motivation for the personalization agenda partly stems from a need to respond to the economic pressures resulting from the epidemiological challenges of dealing with rising cases of chronic and long-term illness on one hand and an ageing population on the other. The Wanless report of 2004 suggested that the NHS would become financially unsustainable unless a new operational model was adopted that would do more to prevent cases of ill health and redistribute the burden of care from the public sector to the private and third sectors, as well as to individual patients themselves. Personalization's emphasis on co-production and greater patient involvement can be seen as a means of facilitating this sort of change. In addition, the stress on individual choice reflects a major theme of the New Labour Government's political project, satisfying their perceived need to make public services meet the rising expectations of a public influenced by a culture of consumerism.[1, 5-7]
Initially, the focus of personalization was limited to giving patients greater choice over how, when and where services were accessed, as well as to who provided the services in question. For example, the introduction of NHS Direct and the NHS Choices website provided new channels by which the public could gain access to information about their condition and the services available. In addition, the renegotiation of General Practitioners’ contracts extended the opening hours of surgeries, allowing patients access to services at more convenient times. More radically, the introduction of the Choose and Book service gave outpatients the chance to choose the time, date and location of their appointment, whilst the scrapping of GP catchment areas allowed patients to register with any GP surgery with an open list. Additionally, measures have recently been introduced which allow patients referred to hospital by their GP the choice of attending any hospital from across the UK, including some independent and private sector institutions. At the same time, the Darzi review of 2008 stressed the importance of the patient's quality of patient experience and introduced Patient Reported Outcome Measures that promised to link a hospital's funding to the feedback received from its patients.
The Coalition government have largely adopted their predecessor's commitment to personalization, stating in their 2011 Open Public Services White Paper that increased choice for service users will be the first principle of their public services reform agenda:
‘Our vision is for public services that revolve around each of us. That means putting people in control, either through direct payments, personal budgets, entitlements or choices. Wherever possible, we will increase choice by giving people direct control over the services they use.’  (P. 8)
The White Paper expresses the Coalition's ambition to introduce personal health budgets and direct payments into the NHS in England for patients with long-term or chronic illnesses, those requiring mental health services and those who need end-of-life care. Pioneered in the social care sector, personal budgets and direct payments are amongst the more radical measures associated with the personalization of health-care services: they involve local authorities allocating funds directly to individual patients instead of to the community-based services to which they would otherwise have had access. In this way, personal budgets allow patients to purchase services from providers, either using the funds that are paid directly to them, as is the case with direct payments, or by agreeing to spend the notional budget that is held and managed on the patient's behalf by their care manager.
The introduction of personal budgets and direct payments schemes go much further than the more superficial elements of personalization, which centre on being able to choose convenient times and location for care: they have the potential to radically transform the NHS by giving patients a choice over the content of the services they are entitled to. Not only will patients be able to purchase services from a vast range of private sector providers, personal budgets put patients in a position to decide how, with only ‘few exceptions’, they spend the money they have been allocated. (P. 25)
Providing patients with the sorts of choices that allow them to tailor services to fit their own particular circumstances clearly represent one sense in which the term ‘personal’ can be applied to the provision of health-care services. The potential benefits of personalizing health care through choice are twofold: Firstly, choice can provide patients with more convenient services that are sensitive to their particular circumstances, as well as to the beliefs, values and preferences they have about their treatment. Secondly, as reports from the National Evaluation of Individual Budget Pilot Programme show, personal budgets tend to instil patients with a significantly enhanced sense of ownership over the services they receive and a greater degree of control over their daily lives. As such, personalization in general, and personal budgets in particular, are presented as means of changing the NHS from a service which does things to or for its patients to one which does things either with patients or provides them with the opportunity to do things for themselves. Both points suggest that the introduction of personal budgets can act as a means of supporting patient autonomy. Certainly, Simon Duffy, a pioneer of personal budgets within social care, refers to the power of personal budgets to ‘increase the power and dignity’ of patients with complex care needs. (P. 1), whilst groups like In Control and the National Centre for Independent Living have shown strong support for the introduction of personal budgets and direct payments as a means of granting patients independence from health and social care services whom they may previously have felt reliant upon under traditional top-down arrangements of care. Moreover, these benefits may be mutually reinforcing, because, as Alakeson suggests, greater patient independence from professionals and institutions may create the space for the expertise of patients to be exploited, facilitating the development of innovative, more holistic forms of care which reflect the beliefs, values and preferences of patients.
An important alternative sense of the word ‘personal’ – one that has tended to be overlooked by much of the literature concerning health-care reform – aligns the notion of the personal with intimacy. For instance, one might refer to a ‘personal relationship’, ask a ‘personal question’ or convey information of a ‘personal’ nature. Personal relationships often involve a closeness between people and are typically characterised by trust, confidence and mutual understanding. In addition, ‘personal information’ is often of an intimate nature, relating to sensitive topics about which the person may feel a degree of vulnerability and would wish to be treated with discretion and confidentiality. Finally, and perhaps most obviously, the word ‘personal’ evokes the person qua human being with all the richness, complexity strengths and frailties this entails. It is the intimate, humanitarian side of ‘personal health care’ that I wish to explore in this section.
There are a great many situations in which qualities of intimacy are important, and, of all these, medical practice in general, and primary care in particular, seems a paradigmatic example. The Royal College of General Practitioners have traditionally understood the role of the GP to centre around providing patients with ‘personal, primary and continuing care’, whereby the term ‘personal’ is understood to refer to intimacy as a core, albeit informal, feature of good professional conduct.[13-15] The role of the doctor as carer involves paying attention to the patient's psychological and emotional needs as well as their bio-physical needs, for which a capacity for empathy and compassion will be a crucial quality for good practice. Moreover, the context of illness often demands a degree of physical intimacy between doctor and patient that is almost unparalleled in other areas of life. As John Berger points out, when we are sick we voluntarily give the doctor access to our bodies, access we ordinarily restrict to only our lovers. (P. 64) The intimate nature of primary care relationships often requires a degree of trust between doctor and patient, and whilst to some degree, this trust might be underpinned by the formal codes of conduct and the legal and ethical frameworks which govern professional medicine, the presence of trust in and between the agents involved remains crucial, not least because of the nature of the patient's suffering. Very often, the patient's condition will cause them to be in a position of pain, embarrassment, fear or vulnerability, and such qualities imbue the relationship between patient and medical professional with a special depth and character in which intimacy is central. Thus, alongside the technical acts of diagnosing and prescribing, an important part of general practice will involve the doctor reassuring and calming the patient, recognizing and reaching out to them as a person, that is, as a suffering human being in need of sympathy and assistance. The same may be said of many other areas of health care, particularly for those involved in mental health and palliative care.
In this section, I consider the relationship between the two sense of ‘personal’ identified above. I examine three arguments that suggest that the introduction of greater patient choice may adversely affect the standard of care patients receive by eroding intimacy within and across health-care relationships.
The first argument I will consider concerns the potentially negative effect that choice may have on the continuity of care. It follows a host of related criticisms directed at similar organizational, operational and technological changes that have occurred across the NHS in the past. For example, in 1965, Theodore Fox argued that advances in medical technology would threaten the ‘personal’ side of doctoring as practitioners became more interested in things rather than people. Similarly, in 1979, Denis Pereira Gray suggested that the switch from separate to combined lists in general practice had let to a break down in the continuity of care, (which he described as the ‘key to personal care’) and the consequent degradation of the doctor–patient relationship. More recently, James McCormick has warned of the ‘death of the personal doctor’ through the organization of general practice into multidisciplinary medical teams in which the patient is passed from specialist to specialist without really forming a relationship with any one professional.
The argument that greater patient choice threatens the continuity of care can be presented in a similar vein. It rests on the claim that allowing patients a choice over which doctor they see, at which time and at which location risks disrupting the relationship between doctor and patient by enabling the patient to alternate their visits between a number of different doctors in place of the doctor that they have previously been allocated. The extent of this threat is unclear because a great many patients may well choose to return to see their regular doctor. Indeed, in some cases, greater choice may act to facilitate continuity of care, for example, by allowing somebody who has moved house to choose to return to their previously local doctor. However, it would seem short sighted not to take seriously the possibility that greater patient choice may disrupt continuity of care in some instances because some patients will no doubt choose to see a doctor they have not met before, possibly out of a pressing need for an appointment, but perhaps also because of the greater convenience which choice affords. This new ability for patients to pick and choose which doctor they see may prevent the development of long-term clinical relationships between patient and doctor, especially if patients are encouraged to value the convenience that choice affords over the long-standing relationships that come with getting to know another person over a number of years. Those, like Gray, who identify the continuity of care as essential to the possibility of ‘personal care’ fear that greater choice may lead to what Adam and Guthrie describe as ‘convenient care from expert strangers’ in which the important qualities of intimacy are lost and standards diminish. (P. 129) Moreover, it may be that the introduction of personal budgets and direct payments accelerates this process, particularly if patients are encouraged to choose cheaper, more efficient or more commercially attractive providers over their existing providers of care. This is not to say that efficiency and cost are not important factors in the provision of care, nor is it to suggest that continuity of care ought always to be considered preferable to convenience; indeed, we may take a positive view of changes which afford patients the opportunity to judge their relative merits. Rather, it is to point out firstly that choice allows patients to visit a number of different medical professionals rather than return to their allocated GP, and secondly that, in such a context, values like convenience, cost and efficiency may need to be balanced against qualities like the trust, confidence and familiarity, which are often associated with sustained continuity of care.
A second set of arguments concerns the culture in which health-care services operate. They are based on an anxiety that increased marketization associated with the introduction of personalization will have a negative impact upon the norms within which the relationships, decision-making processes and practices of health-care operate. Michael Sandel has described how the introduction of market elements to a particular context – especially cultural elements governing people's expectations and motivations – may serve to ‘crowd out’ the existing set of norms and values which previously governed that context1. For example, the introduction of monetary compensation for a socially useful practice – let's say sharing the cleaning of a communal space in a block of flats – which had previously relied on the good will of the residents may affect the way in which those residents think about that practice in future. That is, paying people to do an activity they had always performed voluntarily may bring about a change in their intentions, motivations and expectations towards that activity. In this case, the altruistic virtues of neighbourly good will and a desire to share a clean environment that had previously been the key motivations behind the resident's decision to take their turn to sweep the hall may be ‘crowded out’ by a more self-oriented expectation that they would be paid for the work that they undertook. Whilst concerns about crowding out are highly sensitive to context, and sufficient evidence is yet to gathered to demonstrates the extent to which greater patient choice may change the norms and attitudes within general practice, there remains a prima facie concern that choice may change the way in which patients and professionals approach the care process. For instance, personalization's stress on choice, convenience and independence may introduce a transactional set of norms more typically found in commercial activities into the consultation and care process which subjects patients and professionals to a form of commodification. For instance, the growing influence of a supply and demand model within health care tends to cast the professional as the provider of a resource to be selected and used according to the patient's advantage rather than a partner engaged in caring for them. The introduction of greater choice may encourage patients to consider a trip to their GP as equivalent to a trip to the shops, or any other consumer activity; likewise, for doctors, there is a worry that the patient may come to be seen as a source of revenue rather than as a vulnerable and suffering person in need of their assistance. Moreover, by giving patients direct responsibility for purchasing the services they require, the direct payments scheme effectively recasts patients in the role of the customer. In fact, this recasting of roles is made explicit by the literature on personalization, a great deal of which refers to patients as ‘service users’, ‘clients’, ‘consumers’ and even ‘customers’. John Clarke and Janet Newman have explored patient's attitudes towards these labels, revealing a sense of disenchantment amongst patients who reported feeling alienated by terms like ‘consumer’ or ‘customer’ which, in their view, did not fit their understanding of their identity as patients, nor with their relationships to the professionals providing their care.
The sense of disenchantment may be shared by medical professionals, especially if the growing culture of consumerism alters their perception of and motivations towards their professional role, and affects the environment in which they must work. A great deal has been said about the role of market ideals in the development of the NHS's managerial culture over the last fifteen years, and the influence that this has had on the working environment of its staff.[23, 24] Much of this critique might be thought to add weight to the claims that personalization may threaten intimacy, especially if, as Ferlie suggests, the drive for personalization is accompanied more generally by the sort of narrow managerialist strategy, which characterised the New Labour government's New Public Management techniques. This is because personal care, in the sense of the empathetic and intimate professional–patient relationship outlined above, requires a significant degree of agency from the professional which, as Cribb points out, must be voluntary if it is to be considered genuine. (P. 21) A management culture that relies on tighter methods of professional regulation, stricter performance management and greater reliance on administrative protocols to deliver good professional practice may encourage professionals to passively follow performance guidelines and check lists in a way which disengages them with the process of care. More generally, one might worry that the shift towards greater personalization may lead to a change in the professional role of the clinician, from one in which they are primarily a provider of care towards one in which they are more of a facilitator of the patient's choices. For instance, one might be concerned that the introduction of direct payments risks turning GPs into care plan managers, transforming them from carers into providers of information and gate-keepers of resources.
Annemarie Mol echoes warnings about the dangers of treating care and carers as commodities by drawing a distinction between medical practice based on a ‘logic of care’ and the growing orthodoxy surrounding an increasingly prevalent ‘logic of choice’. Mol argues that the qualities of empathy and trust inherent within caring relationships are in danger of being eroded by the rational and depersonalizing methods of reasoning inherent to the market. Markets function by delineating items from one another and assigning each with a specific value to enable comparisons and calculations of advantage to be made. Mol sees health care as an open-ended and fundamentally uncertain process that does not easily fit with the rigid quantifiable metrics of the market. Moreover, framing the care process in terms of the market has the effect of foregrounding preference satisfaction, personal autonomy and control over decision making as the principal medical values. This point is of particular relevance given the danger that, by understanding patient autonomy in terms of individual self-governance and independence, personalization may end up inadvertently encouraging the mutual isolation of doctor and patient. Whilst patient autonomy can be rightly seen as an important contributor to good medical practice, accepting greater autonomy as an unqualified good seems unwise, especially if it leads to the estrangement of doctor and patients. Whilst qualities like autonomy, control and independence are of obvious value, they may often need to be traded off against other health goods such as patient safety, equity and intimacy.[27, 28] The balance between such health goods requires serious consideration, hence advocates of the choice agenda who uncritically accept autonomy as the principal medical value may be guilty of underestimating the potentially negative effects that calls for greater patient autonomy and choice may have for the caring relationship at the heart of good medical practice.
Finally, there is a danger that framing good practice in terms of the language of choice will lead to the baseline benefits of a traditional caring relationship being overlooked. For instance, models of practice in which choice is limited but where close professional–patient relationships delivers high-quality care are in danger of becoming characterised as ‘impersonal’, ‘insensitive’ and ‘unresponsive’ by association. Thus, the consumerist rhetoric that presents personalization risks systematically downgrading health-care practice which does not fit with its assumed values of choice, and along with them, qualities like intimacy and trust which have traditionally been at the heart of good practice.
A third argument of relevance concerns the effectiveness of choice given the constraints that medical and institutional contexts often place on patients. It suggests that for choice to be of any real value, patients must be in situations where (i) they have access to a range of significant options and (ii) their choices can be effectively enacted. The worry is that in many instances the medical or institutional circumstances in which a patient is situated will prevent either (i) or (ii) being satisfied, rendering the patient's choice either insignificant or ineffective. For instance, a patient suffering a very serious illness for which no form of treatment exists will obviously be unable to exercise an effective choice over the treatment programme they receive. Similarly, if the patient's condition makes only one form of treatment viable, the patient's only choice will be to either accept the treatment that is offered or to refuse treatment altogether. Other sorts of restriction on choice may stem from the institutional context in which patients are embedded. For example, the need to ration resources according to principles of equity will often be a constraining factor that prevents many patients’ choices from being satisfied.
Whilst such constraints may not directly contribute to the erosion of intimacy, they form part of a wider concern for the state of health-care services delivered under the banner of choice. In cases where significant constraints prevent the patient from choosing effectively, the language of choice may prove false, if not harmful, especially if the introduction of choice across the NHS has undermined the long-standing culture of care. There is a danger that, at a time when a close doctor–patient relationship is most needed to help the patient cope with the seriously constraining realities of their condition, a system that prioritises independent choice over intimate care may offer the patient a set of superficial alternatives but none of the empathetic care and attention that they really need.
This study has considered the suggestion that the introduction of a greater degree of patient choice may negatively affect the quality of NHS care by eroding the intimate relationships located at the heart of good health-care practice, thereby making greater impersonality an unintended consequence of the drive for personalization. There is certainly a clear need for policy makers to respond to the changing economic and epidemiological challenges facing the NHS in a way that improves the quality of services and promotes patient autonomy. Should personalization be able to rise to these challenges it ought to be broadly welcomed? However, in assessing the merits of personalization, it will be important to consider not only the effect it has on cost, efficiency and patient experience, but also its effect on the macro-culture within which the NHS operates and on the quality of treatment interactions between patients and professionals.
There is no doubt that choice brings with it benefits associated with greater convenience and independence, not to mention potential gains in efficiency and effectiveness of the system overall, Dismissing the introduction of greater patient choice on principle therefore seems wrong-headed. However, it will be interesting to consider the extent to which choice really is essential to personalization, or whether the emphasis on choice might be thought of as the product of a wider political–economic agenda. Whilst choice plays a key role in the tailoring of services to the requirements of individual patients, such tailoring might be achieved without choice, for instance, by professionals developing a closer – or more personal – understanding of their patients as people. For example, allotting more time for primary care consultations or facilitating a richer dialogue between professional and patient may be ways of promoting patient voice as well as strengthening the patient's relationship with the professional, encouraging their greater participation in, and influence over, the decision-making process,
Finally, it is not obvious that choice must erode intimacy, and so perhaps the most useful note to conclude on would be one which considers how personalization may be conceived to combine the qualities of convenience, independence and intimacy to give a rich understanding of the meaning of personalized health care. Certainly, patients granted choice would often be able to choose in favour of intimacy as well as away from it, and just as personal care may involve close, intimate attention that responds to the needs of individual patients, it seems possible for the doctor to support the choices of patients in ways that involve, and perhaps even require close relationships. For example, every patient allocated a personal budget must exercise their choices alongside a care manager whose responsibility it is to provide them with support and guidance during the decision-making process. No doubt many patients will form close, supportive relationships with their care managers. So, whilst it is important to understand the potential tension between choice and intimacy, the real challenge for policy makers will be to come to an understanding of a personalized NHS in which these qualities can be successfully combined.
Though related, Sandel's discussion of crowding out, which focuses on shifting social norms, ought to be distinguished from Bruno Frey's writing about crowding out, which concentrates more specifically on the relationship between intrinsic and extrinsic motivation.