Introduction

As we have seen in the introduction to this book, there remains a lack of consensus about the actual meaning of patient or person ‘centredness’ in the context of health systems. There is considerable overlap with concepts such as ‘empowerment’ and ‘participation’. Some view empowerment as a core principle or dimension of patient-centred care (Reference Docteur and CoulterDocteur & Coulter, 2012; International Alliance for Patients’ Organizations, 2006), while others define centredness as a foundation or prerequisite for achieving empowerment (Reference CastroCastro et al., 2016; Reference LhussierLhussier et al., 2015).

A wide range of reviews have been carried out over the past two decades to better understand patient- and person-centred care and related concepts. Yet uncertainty remains, mainly because reviews tend to differ on a number of characteristics, such as:

• the methodological approach: including scoping review (Reference ConstandConstand et al., 2014), systematic review (Reference Kogan, Wilber and MosquedaKogan,Wilber & Mosqueda, 2016), meta-narrative review (Reference KitsonKitson et al., 2013), and integrative review (Reference Sidani and FoxSidani & Fox, 2014), as well as dimensional (Reference HobbsHobbs, 2009) or concept analysis (Reference CastroCastro et al., 2016; Reference Lusk and FaterLusk & Fater, 2013; Reference Morgan and YoderMorgan & Yoder, 2012; Reference Holmstrom and RoingHolmstrom & Roing, 2010), discourse analysis (Reference PluutPluut, 2016), or a combination of these (Reference Hughes, Bamford and MayHughes, Bamford & May, 2008; Reference Mead and BowerMead & Bower, 2000; Reference McCormack and McCanceMcCormack & McCance, 2006; Reference SchollScholl et al., 2014);

• the disciplinary perspective: mainly medicine (Reference LhussierLhussier et al., 2015; Reference Mead and BowerMead & Bower, 2000; Reference SchollScholl et al., 2014) and nursing (Reference McCormack and McCanceMcCormack & McCance, 2006), although several studies looked across disciplines (Reference CastroCastro et al., 2016; Reference ConstandConstand et al., 2014; Reference Hughes, Bamford and MayHughes, Bamford & May, 2008; Reference KitsonKitson et al., 2013; Reference Morgan and YoderMorgan & Yoder, 2012; Reference Sidani and FoxSidani & Fox, 2014);

• the setting: considering for example general practice or family medicine (Reference HudonHudon et al., 2012; Reference Mead and BowerMead & Bower, 2000), acute or post-acute inpatient care (Reference CastroCastro et al., 2016; Reference Morgan and YoderMorgan & Yoder, 2012; Reference McCormack and McCanceMcCormack & McCance, 2006; Reference HobbsHobbs, 2009), rehabilitation (Reference LeplegeLeplege et al., 2007), dentistry (Reference MillsMills et al., 2014), or across settings (Reference ConstandConstand et al., 2014; Reference Hughes, Bamford and MayHughes, Bamford & May, 2008; Reference SchollScholl et al., 2014; Reference Sidani and FoxSidani & Fox, 2014); or

• the patient population or service area: such as chronic care (Reference HudonHudon et al., 2012), older people (Reference Kogan, Wilber and MosquedaKogan, Wilber & Mosqueda, 2016) or maternity services (Reference De Labrussede Labrusse et al., 2016).

As a consequence, it remains challenging to arrive at an overarching common conceptual framework relevant to policy-making. At the same time, seminal work in the field has informed key policy documents at national and international levels, embracing the notion of patient- or person-centredness as fundamental to the delivery of health care that is accessible, effective and of high quality (Australian Commission on Safety and Quality in Health Care, 2011; Department of Health, 2010; Institute of Medicine, 2001; International Alliance for Patients’ Organizations, 2006; International College of Person-centered Medicine, 2011).

In this chapter, we explore the evolution of patient- or person-centredness and seek to synthesize the insights emerging from existing reviews in the academic literature and policy documents. We begin by briefly tracing the emergence of the different notions and their objectives in the health and care sectors. We then critically examine the range of definitions and conceptualizations and consider the role of the perspective of different stakeholders and disciplines in shaping the understanding of these concepts. We close this chapter with some overarching observations and conclusions.

Informed by the review of the different concepts in this chapter, we use the term ‘person-centred’ throughout the entire volume. This decision was driven, mainly, by a recognition that the term ‘patient-centred’ may too narrowly focus on the patient–provider interaction within the individual (clinical) consultation and insufficiently take account of the social context within which people live and that influences disease trajectories and care choices (Reference HobbsHobbs, 2009; Reference StarfieldStarfield, 2011). More importantly perhaps, the notion of ‘patient’ may unduly reduce the individual to one affected by a given health problem (or disability) within the medical care system while within the context of this book we consider the broader context of health systems with the individual person at the centre in terms of exercising voice and choice and actively involved in shaping health services at the different tiers in the system (see Chapter 1). However, when reviewing the academic literature and policy documents we have considered both patient- and person-centredness because of their frequent and, at times, interchangeable use in the health care context.

Tracing the evolution of patient- and person-centredness as a concept in the health care context

The roots of some of the core principles underlying the idea of patient- and person-centredness date back to ancient civilizations that conceptualized health holistically and viewed respect for individuals as a key value (Reference MezzichMezzich et al., 2009). It is only more recently that either notion has emerged as a distinct term, although descriptions and interpretations of the evolution of these concepts vary among authors. This largely reflects the underlying differences in disciplines and perspectives (Reference HobbsHobbs, 2009; Reference KitsonKitson et al., 2013; Reference LeplegeLeplege et al., 2007; Reference Mead and BowerMead & Bower, 2000; Reference Laine and DavidoffLaine & Davidoff, 1996; Stewart et al., 2003). For example, in the UK and Canada the terms patient-centredness and patient-centred medicine have been most closely linked to family medicine and general practice (Reference LevensteinLevenstein et al., 1986; Reference Mead and BowerMead & Bower, 2000). Here, the concept can be traced to the writings of Balint in the 1960s, who described patient-centredness in medicine in the context of the physician–patient encounter, arguing for the physician to understand the patient as a whole person and “unique human-being” (Reference BalintBalint, 1969, p. 269). Similar developments have occurred elsewhere in Europe from around the mid-20^th century, including in France, Switzerland and Sweden. Here, the approach to the medical encounter that emphasizes the whole person has been more commonly referred to as person-centred medicine (Reference LeplegeLeplege et al., 2007; Reference PfeiferPfeifer, 2010; Reference MezzichMezzich et al., 2009).

In the USA the emergence of patient-centredness in medicine can be traced to the patient rights movement since the 1960s, and the concept is seen to have evolved at different paces in different aspects of medical care, from the process of patient care, to medical law, medical education and quality assurance (Reference Laine and DavidoffLaine & Davidoff, 1996). Some of the most influential work in the field that eventually led to the establishment of the Picker Institute and the formulation of the Picker principles of patient-centred care (see below) originated from empirical research undertaken in the hospital setting in the USA during the 1980s (Reference GerteisGerteis et al., 1993; Picker Reference InstituteInstitute, 2013). That work also informed the formulation of patient-centred care as one of the core components of high quality care as advanced by the US Institute of Medicine’s influential 2001 report, ‘Crossing the Quality Chasm’ (Institute of Medicine, 2001).

The nursing literature has linked the idea of ‘centredness’ more closely to the notion of caring, tracing its origins to Florence Nightingale and the emergence of modern nursing, with its focus on the patient, in contrast to medicine with its focus on the disease (Reference Morgan and YoderMorgan & Yoder, 2012). This understanding is most often, although not always, expressed through the use of the term person-centred care (Reference McCormackMcCormack, 2003; Reference McCormack and McCanceMcCormack & McCance, 2006; Reference Morgan and YoderMorgan & Yoder, 2012). In this context, a number of scholars both in the medical and the nursing literature have referred to the writings of Carl Rogers in the 1940s on client-centred psychotherapy, which are seen to have influenced the understanding of the relationship between the professional (doctor, nurse, therapist) and the patient in building a therapeutic alliance as a key component of person-centred care (Reference Hughes, Bamford and MayHughes, Bamford & May, 2008; Reference Morgan and YoderMorgan & Yoder, 2012; Reference LeplegeLeplege et al., 2007; Reference Mead and BowerMead & Bower, 2000).

The concept has evolved and expanded over time, with a broad range of terminologies, definitions and multiple dimensions discussed in the literature. Thus, Reference SchollScholl et al. (2014) identified, in a systematic review of patient-centredness in health care, 417 articles that contained a definition of the concept. Their review also noted that over 80% of reviewed papers had been published after 1999, pointing to the exponential increase in recognition of the notion of this and associated concepts in both research and the policy context. Box 2.1 presents a selection of definitions of patient- and person-centred care that have been proposed since the late 1960s.

The range of definitions presented in Box 2.1 is not meant to be exhaustive but rather serves to illustrate the variety of understandings of the concept and the different emphasis placed on particular aspects. However, notwithstanding the differences between definitions and characterizations, a number of common themes can be identified. These relate to the fundamental ethical premise that patients should be treated as persons, with respect and dignity, and that care should takeinto account their needs, wants and preferences (Reference DugganDuggan et al., 2006; Reference Entwistle and WattEntwistle & Watt, 2013), which reflect the key concerns that the idea of patient- or person-centredness is expected to address.

Indeed, the emergence of patient-centredness in medicine has been linked to the perceived shortcomings of the conventional way of providing medical care, in particular the physician–patient interaction (Reference DugganDuggan et al., 2006; Reference Laine and DavidoffLaine & Davidoff, 1996; Reference Mead and BowerMead & Bower, 2000). This interaction was seen to be too disease- or illness-oriented, where the patient is “reduced to a set of signs and symptoms” (Reference Mead and BowerMead & Bower, 2000, p. 1008) and the health care professional to a technician who delivers a given intervention and performs procedures (Reference DugganDuggan et al., 2006). The traditional model was also viewed as too paternalistic and system- or staff-centred, that is, inappropriately focused on the needs and interests of those providing the services, thus giving insufficient attention to the needs, preferences and values, and autonomy of the individual patient (Reference Entwistle and WattEntwistle & Watt, 2013). A patient- or person-centred approach, then, is seen to provide a strategy to overcome or correct for these limitations as reflected in the range of characterizations shown in Box 2.1.

It is against this background that different authors have proposed conceptualizations of patient-centred care that distinguish a set of dimensions or domains from specific perspectives and Table 2.1 presents a selection of influential frameworks. The most commonly known is perhaps the conceptualization which was developed within the Picker-Commonwealth Program for Patient-Centered Care. This programme began in the 1980s in the USA to promote the movement of patient-centredness into a comprehensive health care system as a way to deliver better health care services (Reference GerteisGerteis et al., 1993). Adopting an explicit patient perspective, the framework put forward by Reference GerteisGerteis et al. (1993) identified seven dimensions of patient-centred care (Table 2.1). As noted earlier, these dimensions became the Picker principles of patient-centred care, with an eighth dimension (access to care) added subsequently to emphasize the need for care to be available and accessible in a timely manner (Picker Reference InstituteInstitute, 2013). This programme was the first to identify that patient-centred care should not only occur at the interpersonal level, between care provider and patient, but also at the organizational level (Reference KitsonKitson et al., 2013). As noted earlier, it informed the US Institute of Medicine’s programme on health care quality, as well as health policy internationally.

In Canada, at around the same time, Reference StewartStewart et al. (1995) developed a model of the patient-centred clinical method in the context of primary care, building on both theoretical and empirical research. This work identified six dimensions of the patient-centred process and it has been seen to be influential in stimulating patient-centred research in primary care, in particular around effective doctor–patient communication (Reference KitsonKitson et al., 2013). The model developed by Reference StewartStewart et al. (1995) also informed work by Reference Mead and BowerMead & Bower (2000), who proposed a conceptualization of patient-centred medicine that focused on the physician–patient relationship. This framework identified five key dimensions with each representing a particular aspect of the physician–patient relationship (Table 2.1).

The nursing literature has evolved in parallel but is less frequently referred to in the writings about patient-centred care. Indeed, the nursing perspective has tended to use the term ‘person-centred’ rather than patient-centred care, reflecting its focus on caring rather than diagnosis and treatment options, as highlighted above. Work by McCormack and colleagues (Reference McCormackMcCormack, 2003; Reference McCormack and McCanceMcCormack & McCance, 2006) is seen to have been particularly influential in informing the development of person-centred nursing (Reference KitsonKitson et al., 2013). Arguing from the perspective of nursing theory and influenced by Donabedian’s work on quality of care, Reference McCormack and McCanceMcCormack & McCance (2006) proposed a person-centred nursing framework that comprises these constructs:

Similar to the aforementioned work of the Picker-Commonwealth Program for Patient-Centered Care, Reference McCormack and McCanceMcCormack & McCance (2006) highlighted the importance of the care environment in enabling the delivery of person-centred care. Indeed, the care environment is seen to have a “major impact on the operationalization of person-centred nursing, and has the greatest potential to limit or enhance the facilitation of person-centred processes” (p. 476). We will return to this issue below.

Patient-centredness and person-centredness: the same but different?

So far, we have considered the terms patient-centredness and person-centredness in parallel, as if they were interchangeable. However, as indicated above, this is not necessarily the case and here we explore the similarities and differences between these two notions in order to encourage a more nuanced debate of their actual meaning.

As noted earlier, based on our assessment of the available literature, we have observed that differences in the usage of these terms appear to reflect, to a great extent, different disciplinary traditions, perspectives and settings. For example, considering the perspective of the medical encounter, we have seen that the Anglo-American literature has, at least traditionally, tended to emphasize the notion of patient-centredness and patient-centred medicine (and more recently, patient-centred care) (Australian Commission on Safety and Quality in Health Care, 2011; Reference BerwickBerwick, 2009; Reference GerteisGerteis et al., 1993; Reference Laine and DavidoffLaine & Davidoff, 1996; Reference Mead and BowerMead & Bower, 2000; Picker Reference InstituteInstitute, 2013), whereas some of the continental European literature has tended to use the notion of person-centred medicine (Reference LeplegeLeplege et al., 2007; Reference MezzichMezzich et al., 2009; Reference PfeiferPfeifer, 2010) and person-centred care (Reference EkmanEkman et al., 2011).

This is, in part, reflected by the frequency with which either term is used in the predominantly medical literature as compiled in PubMed, the archive of biomedical and life sciences journal literature at the US National Institutes of Health’s National Library of Medicine, and illustrated further in Figure 2.1.

Figure 2.1 Frequency of articles mentioning versions of ‘patient-centred’ or ‘person-centred’ in the biomedical and life science database PubMed by July 2017

Source: authors’ compilation based on PubReMiner, 2017

Clearly, the number of mentions of a particular term in the biomedical and life sciences literature can only be seen as an approximation of the use of a given term in practice; however, Figure 2.1 indicates that ‘patient-centred’ is by far the most commonly used term in the literature overall, and in particular in studies originating from the USA, reflecting, at least in part, the predominance of US-based papers in PubMed (Reference Xu, Boggio and BallabeniXu, Boggio & Ballabeni, 2014).

The nursing literature has tended to more explicitly use the term person-centred care (Reference KitsonKitson et al., 2013). This view is confirmed by, for example, the Royal College of Nursing in the UK, which uses the notion of ‘person-centredness’ deliberately to bring the different roles of service users (as patients in health care; clients in mental health care; residents in residential care homes) together using one term (Royal College of Nursing, 2015). Yet this is not consistent, with some nursing work also using ‘patient-centred’ care, although that work tends to focus on the acute, inpatient setting (Reference HobbsHobbs, 2009; Reference Lusk and FaterLusk & Fater, 2013).

It may be worth noting in this context that the Royal College of General Practitioners, also in the UK, highlighted in a 2014 report the importance of using the term patient-centred (Royal College of General Practitioners, 2014). It argued that the term patient was easily understood by professionals and the public and, notably, it would “challenge any negative associations that the word patient may suggest in today’s NHS” (p. 10). However, at the same time the report emphasized the desirability of using ‘person-centred’ to describe the vision of an individualized, whole person approach to care.

The Health Foundation, an independent charity based in the UK, promoted a widely cited conceptualization that explicitly promotes the use of the term person-centred care as an approach that takes into account the whole person and “their preferences, wellbeing and wider social and cultural background” (Health Reference FoundationFoundation, 2014, p. 9) – the very same characteristics that were identified to be among the core dimensions of patient-centredness as proposed in the seminal work by Reference Mead and BowerMead & Bower (2000) (see below).

Are patient- and person-centredness the same, then? Reference Hughes, Bamford and MayHughes, Bamford & May (2008) carried out a review of the term ‘centredness’ across health care more broadly, to help clarify the use of the different concepts that have been emerging over recent decades, including client-, family-, patient-, person- and relationship-centred care (Table 2.2).

They found that the different types of ‘centredness’ contained, at a conceptual level, similar themes, and these, they argued, “could be used to characterize any particular type of centredness in health and social care settings” (p. 461). This view might indicate the need to further specify the definition of the different concepts, a call that has been made by a number of authors in order to enable operationalization and measurement of patient-centredness in particular (Reference Kogan, Wilber and MosquedaKogan, Wilber & Mosqueda, 2016; Reference Mead and BowerMead & Bower, 2000; Reference SchollScholl et al., 2014). However, given the multidimensionality of each of the concepts, Reference Hughes, Bamford and MayHughes, Bamford & May (2008) argued that it may not be possible to identify one single aspect that defines, say, patient-centredness as a whole. Also, existing measurement tools of, for example, patient-centredness address only some of the dimensions that are seen to be relevant to this concept, such as patient trust and satisfaction. As a consequence, most empirical studies of impacts of patient-centredness have only been able to identify evidence for some aspects of patient-centredness (Reference McMillanMcMillan et al., 2013; Reference Rathert, Wyrwich and BorenRathert, Wyrwich & Boren, 2013; Reference De Silvade Silva, 2014). Indeed, as argued by Reference Hughes, Bamford and MayHughes, Bamford & May (2008), given the complexity of the concept it may be unrealistic to measure it in its entirety within a single study.

Similarly, Reference Sidani and FoxSidani & Fox (2014) considered a wide range of disciplines and settings in their review of patient-centred care. They noted that while there were slight variations in, for example, the terminology used, they found more similarities than differences with regard to the components distinctive of patient-centred care. Reference HobbsHobbs (2009), in her review of patient-centred care, also noted that the (nursing) literature did not appear to fundamentally differ in terms of defining underlying constructs. At the same time, she asserted that the term person-centred care may more adequately reflect the shift of focus away from illness and disease towards the person experiencing illness. Hobbs further suggested that the core element of recognizing the patient as a person with the ability to make autonomous decisions was common to literature that used either term but that this element was more developed in the literature using the label ‘person’. Based on this observation, she proposed that moving away from the use of ‘patient’ to that of ‘person’ “may enable broader conceptualizations of the individual experiencing illness” (Reference HobbsHobbs, 2009, p. 58). This latter view was reinforced in a commentary by Reference Lines, Lepore and WienerLines, Lepore & Wiener (2015), who highlighted the importance of terminology in recognizing that the social context within which people live can affect disease trajectories and care choices and ought to be taken account of in order to improve outcomes.

A similar view was offered by Reference StarfieldStarfield (2011), who, based on a review of the evidence, noted that definitions of patient-centred care tended to be organized around patient–provider interactions within individual consultations, which may be episode-oriented. Conversely, conceptualizations of care focused on the person would typically stress the longitudinal nature of the patient–provider relationship, which would see diseases and body systems as “interrelated phenomena” (p. 63) and which would be concerned with understanding people’s experienced problems. This was seen to be of particular relevance in the context of chronic and multiple care needs, which also highlights the role of collaboration and coordination as a key feature of person-focused care.

Finally, the late 1990s also saw the emergence of a new concept of ‘people-centredness’. This was first discussed in the context of health reforms in the UK at that time, which envisaged enhancing efficiency and maximizing health gain, alongside offering patients greater choice and calls for local communities to be more engaged in setting health care priorities (Reference Williams and GrantWilliams & Grant, 1998). The notion of people-centred health systems was subsequently taken up by the World Health Organization in the context of efforts to address the continued pressures facing health systems, in particular equitable access to care that is both of high quality and responsive to the needs of people (World Health Reference OrganizationOrganization, 2016; World Health Organization Regional Office for Europe, 2012; World Health Organization Western Pacific Region, 2007). These documents explicitly identify patient-centred care as focusing on the individual seeking care, while people-centred care would also consider the health of people in their communities and their crucial role in helping to shape health policy and services (World Health Organization Regional Office for Europe, 2012). More specifically, people-centred care is interpreted as an approach to care that “consciously adopts individuals’, carers’, families’ and communities’ perspectives as participants in, and beneficiaries of, trusted health systems that are organized around the comprehensive needs of people rather than individual diseases, and respects social preferences” (World Health Reference OrganizationOrganization, 2016, p. 2). This approach would require that people have the education and support to enable them to make decisions and participate in their own health and care, while also supporting carers.

Implications and conclusions

This chapter set out to synthesize some of the key insights emerging from the evidence around the concepts of patient- and person-centredness in the health care context. In line with other authors, we have shown that there remains considerable debate about the specific meanings of the different concepts, reflecting the different professional disciplines, perspectives and clinical settings, as well as different regional and country contexts, within which either notion has been approached and discussed. However, we have also seen that despite variations in terminology, when considering seminal texts from different disciplinary backgrounds (e.g. health policy, medicine and nursing), these tend to be fairly consistent regarding broad themes (Reference Hughes, Bamford and MayHughes, Bamford & May, 2008; Reference KitsonKitson et al., 2013; Reference Sidani and FoxSidani & Fox, 2014). These themes relate to the fundamental ethical premise that patients and service users should be treated as persons, with respect and dignity, and that care should take into account their needs, wants and preferences (Reference DugganDuggan et al., 2006; Reference Entwistle and WattEntwistle & Watt, 2013).

Much of the literature on patient- and person-centredness has tended to focus on the interpersonal level between the care provider and the individual patient. Indeed, according to Reference KitsonKitson et al. (2013), it is only the health policy and nursing literature that has tended to focus explicitly on wider system and contextual issues, whereas the medical discourse tended to be “constructed around a very clearly delineated relationship between the individual medical professional and the patient” (p. 12). Reference HobbsHobbs (2009) highlighted the importance of the organizational and institutional context for providing person-centred care, with the distribution of authority and interaction of systems found to be of particular relevance. For example, organizations that relied primarily on a command-and-control style of leadership were less likely to provide person-centred care compared to those with shared governance. Few analyses and conceptualizations go beyond this meso-level awareness, however, with a subsequent systematic review noting that of the various dimensions characterizing patient-centred care, none addressed the macro-level of health systems (Reference SchollScholl et al., 2014).

In this context, it is notable that there is considerable variation across the reviews and documents considered in this chapter as to whether patient- or person-centredness is to be seen as a concept or a framework that helps inform the delivery of care (e.g. Reference McCormack and McCanceMcCormack & McCance, 2006; Reference Mead and BowerMead & Bower, 2000; Stewart et al., 2003), a complex intervention (Reference Sidani and FoxSidani & Fox, 2014), a means to enhance the quality of care more broadly (e.g. Institute of Medicine, 2001) or an end, that is, a principle guiding the design of health systems more widely (e.g. World Health Reference OrganizationOrganization, 2016; World Health Organization Regional Office for Europe, 2012; World Health Organization Western Pacific Region, 2007). Each of these perspectives, also linked to the philosophical and performance-based arguments as discussed previously (see Chapter 1), is of course legitimate but they will have different implications for the further development of health services and systems.

Finally, although work reviewed in this chapter has covered different disciplines, perspectives and settings in interpreting the conceptual foundations of patient- and person-centredness, few studies have explicitly considered the views of different stakeholders (Reference KitsonKitson et al., 2013). For example, Reference Gillespie, Florin and GillamGillespie, Florin & Gillam (2004) found, in an interview study of clinical, managerial and lay stakeholders in the UK, that each group tended to place different emphasis on different aspects of patient-centred care. Notably, health professionals were more likely to interpret this notion as communication skills in terms of explaining and eliciting information (but not necessarily in terms of shared decision-making) within the individual consultation, while managerial stakeholders tended to view patient-centred care to be grounded in quality assurance measures. Conversely, lay groups viewed patient-centredness in the context of a social or whole person model of health, and this was frequently expressed to occur at the level of patient involvement in planning and delivery of services rather than within the individual clinical encounter. This reflects only one study in a specific health system context but similar findings have been reported in a study set in Switzerland (Reference GachoudGachoud et al., 2012).

These observations illustrate that while different stakeholders all agree that patient- or person-centredness is important, the concept very much remains subject to debate, with different perspectives attaching different meanings and with different implications. To help inform policy development it will be important to better understand this diversity of interpretations of centredness at the different tiers within the health system and backgrounds in order to achieve the goal for health systems to take a more person-focused approach.