The JECP-European Society for Person-Centered Healthcare (ESPCH) Section on Person-Centred Care.

In the current issue of the JECP, we welcome readers to the new Section on Person-Centred Care (PCC), a joint initiative between the Journal and the European Society for Person-Centred Healthcare (ESPCH). The inauguration of the ESPCH was initially announced within the European Journal for Person-Centred Healthcare (EJPCH, the official journal of the ESPCH)1 in September 2013.2 The Society was established with a wide-ranging remit set out in its initial 10 Year Strategic Plan (2014–2023), with the general mission of clarifying the conceptual basis of PCC, establishing a broad ESPCH-formulated definition, and then moving forward on this basis to the development of conditions-specific person-centred models of care for operational implementation within modern healthcare systems. The interest of the JECP itself in PCC has taken varying forms over the almost three decades since the foundation of the Journal in 1995. We do not provide here a detailed historical account of that evolution and progress, but instead draw briefly upon some three specific articles (and later, also on other key texts) to place the institution of the current Section on PCC in general context. In each case, the reader is referred to the individual original papers for their associated bibliographies. ‘Medicine today is not what it used to be. Exponential increases in technological and biomedical advance over the last 100 years or so have radically transformed the scope, possibility and power of clinical practice, driving enormous shifts in individual and population health. Yet despite such staggering progress, there is a growing and pervasive sense of unease within international medicine, indeed a frank recognition perhaps, that all is not entirely well, leading an increasing number of authors and commentators from a wide variety of clinical, academic and patient backgrounds, to claim that medicine has entered a time of significant crisis, urgently needing to re-learn what it has progressively forgotten in over a century of empiricism. The aetiology of the crisis in medicine is complex in nature, but is characterized principally by the evolution of a scientistic reductionism and executive technocracy in health care, the former deriving from movements within medicine itself and the latter arising from the colonization of health care decision making by non-clinical administrators remote from clinical practice, a new elite that has emerged from the rise of managerialism within global health services’. ‘EBM has never quite fully understood that people who have become ill present not as a collection of organ systems, one or more of which may be dysfunctional requiring scientifically indicated technical and pharmacological interventions, but rather as integral human beings with narratives, values, preferences, psychology and emotionality, cultural situation, spiritual and existential concerns, possible difficulties with sexual, relational, social and work functioning, possible alcohol and substance abuses and addictions, worries, anxieties, fears, hopes and ambitions, personal life goals and aspirations—and much more. Scientific medicine can, by its nature, address only a fraction of such concerns, illustrating the limits of science in medicine, limits which directly and unequivocally preclude the very notion of a science-based clinical practice’. ‘The last decade in particular has brought with it, in response to these dilemmas, an increasing recognition that chronically ill patients need far more comprehensive forms of assistance than the technoscientific approaches which continue to be favoured by EBM. This mandates the need to move away from our currently impersonal, fragmented and decontextualized approaches to the management of these conditions, towards newer models of care that are personalized, integrated and contextualized. In this way, affordable biomedical and technological advances can continue to be delivered to patients on the basis of objective clinical assessment, but within a humanistic framework of care which strives to understand the subjective experience of illness and to respond to it as effectively as possible. Such imperatives have led to the emergence of a new discipline of academic study and clinical action termed ‘person-centered care’ (PCC). PCC is a compassionate and comprehensive approach to the care of those who suffer and represents a high ethical ideal. It argues that modern health and social care needs not just science alone, but rather science plus—science plus humanism. For this reason, it may be considered intuitively the ‘right’ approach to the management of the health and social complexities of chronic illness. But there is much more than intuition to be taken into account when arguing for the superiority of PCC approaches above EBM or over ‘care as usual’. Indeed, a rapidly accumulating empirical research base is now complementing the burgeoning qualitative research literature of PCC, with three distinct justifications for this new model of practice having recently been articulated—(a) an ethical/professional justification, (b) an ‘evidence-based’/scientific justification and (c) an economic justification. Progress of this type is in contrast to that of EBM, which has remained a concept in search of a convincing empirical justification that, as we are able to see, has so far eluded it’. In parallel with, and subsequent to, the publication of these articles, a great deal of progress in the field has been made, guided by ongoing, wide-ranging discussions of the imperatives for PCC. Why should we ‘do’ PCC? And if it is agreed that PCC has the potential to bring many benefits to patients over and above ‘care as usual’, then how is it to be more widely implemented and its methodologies refined? For the purposes of this Editorial Introduction, we will address these questions in outline here before proceeding to an exhortation for an increased pace of methodological development in the field, and an explanation of the reasons for why we advance it. We will then conclude with a Call for Papers for the new Section which invites contributions on each of the many areas of focus discussed, from the wide variety of colleagues who collectively constitute the modern ‘healthcare ecosystem’. We have previously argued that there are three distinct ‘justifications’ for ‘doing’ PCC. These (touched upon in the latter part of the conclusion from5 directly above) are represented by an (a) ethical/professional justification, (b) a scientific/evidence-based justification and (c) an economic justification.6 In describing the ethical/professional justification, we refer to the argumentation posed by Miles and Loughlin within the first of the three article exemplars given above. Specifically, that while the exponential increase in biomedical and technological advances over the last 120 or so years have radically transformed the scope, possibility and power of clinical practice, it has nevertheless been possible to observe that as medicine and healthcare have become increasingly scientific, they have also become increasingly depersonalised.3 This inverse correlation was formally documented by Peabody almost a century ago in 1927,7, 8 then some few decades later in the 1940s by other investigators such as Tournier,9 and toward the end of that century by notable figures such as Bailint10 and Engel.11 These investigators described a general decoupling as occurring between science and humanism in medicine, illustrated by an accelerating dissociation of medicine's duty to ameliorate, attenuate and cure (the use of science in medicine), from its duty to care, comfort and console (the preservation of the humanity of medicine).12 This process, observable therefore during the entire course of the 20th century, has continued to increase and embed in the 21st. In consequence, medicine and healthcare, as we see them practised in the first quarter of our current century, continue to display a ‘preferential fascination with the molecular and cellular basis of disease, rather than an authentic fascination with the person of the patient’.6 There appears, then, a signal failure to act in recognition of the fact that ‘the disease is part of the patient and not the patient part of the disease’, and that patients, having become ill, present to clinicians and health systems ‘not as a collection of organ systems, one or more of which may be dysfunctional requiring scientifically indicated technical and pharmacological interventions, but rather as integral human beings’.6, 12 If clinicians do not actively return to seeking an understanding of the patient's subjective experience of illness, then the opportunity to identify the plethora of important needs which derive from it is frankly neglected, and risks clinicians functioning more as technicians in applied bioscience, rather than acting as caring professionals exercising skill and judgement in the context of the unique individual case.13 If such a transmogrification were allowed to progress to completion, and it is already far advanced, then the depersonalization (indeed dehumanization) of clinical practice, will inevitably result in a revision (meaning, for us, failure) of medicine's historic philosophies and ideals, with patients seen not as persons, but rather as subjects, objects or complex biological machines.14-16 With Montgomery,17 we argue in this context that medicine is fundamentally a human endeavour with a moral character that employs science but which does not directly equate to it.18 Medicine, then, is a science-using practice which, as we have discussed, has an indispensable duty to care, comfort and console, as well as to ameliorate, attenuate and cure. These distinct, but highly interrelated functions, must be firmly held together in tight integration, and never to be held apart as if they were polar opposites or selectable options.17, 18 To consider the scientific/evidence-based justification for ‘doing PCC’, let us move now beyond this ‘simple’ account of the former imperative referring, as it does, to medicine's foundational humanism, to an overview of ‘the evidence for doing PCC’ itself. It has been said that the contradistinction between the nature and outcomes of humanistic medicine, and depersonalised/dehumanized medicine, illustrates why PCC is intuitively the ‘right’ way to practise clinically. But, as may easily be seen, there is a great deal more than intuition itself to be considered when studying the utility of PCC within modern healthcare systems.6, 12 As we write, the substantial quantity of qualitative research that has explored the impact of PCC-type approaches to clinical care over many decades, and which has served progress in the field extremely well indeed, is now being increasingly augmented by a rapidly accumulating empirical research base, and by the results from mixed methods research in addition. Taken as a whole, these well-established modes of experimental enquiry have confirmed the potential of PCC to modify a range of highly important processes and outcomes of care in a wide variety of differing clinical settings.6, 12 The principal indices of interest in this context focus on core aspects of service provision which span, essentially, the entirety of the patient journey beginning with diagnosis and the institution of therapeutics, to the end of the disease trajectory itself. For example, PCC approaches to care have been observed to increase patient adherence to both simple and complex medication regimens, and to decrease the frequency of primary and secondary care visits and clinical consultations. Perhaps unsurprisingly, from a probabilistic standpoint, improved adherence rates to pharmacological therapies and other clinical recommendations, appear to translate into a corresponding decrease in the frequency of disease exacerbations, helping to preclude exacerbation-related increased hospitalization rates and, following hospitalization, extended lengths of institutional stay.6 Additionally, accumulating evidence indicates an ability of PCC-mediated approaches to care to increase patient (and patient family) health literacy. These are associated with the selection—assisted by shared decision-making between clinicians and patients—of more conservative than radical treatment options, which typically align more closely to the patient's own lifestyle needs. Moreover, PCC approaches to care have been correlated with the maintenance of, or even increases in, patient and also clinician satisfaction rates with care. Further benefits include observed increases in the rates of confident self-help, care and management, and in measures of health-related quality of life.6, 12 Of significant importance also is the ability of PCC practices to reduce clinician burn out, and to reduce the rates of malpractice claims. Finally, PCC approaches to care have been associated with costs of care reduction, containment, or limitations in cost increases, as we shall consider briefly below.6, 12 In summary, then, the rapidly growing evidence base for the effects of PCC-type approaches on patient behaviour and service utilization are of incontrovertible significance to the efficiency and effectiveness of clinical care and future health services provision. Additional proof of principle and process-outcome studies are, of course, required to examine the value to patients and clinicians of PCC approaches in the short term, as are longitudinal studies aimed at exploring their durability in sustaining improvements in the longer term—and what these might mean for living well with chronic and socially complex illness(es) in particular, over their trajectories. The way forward now is to consolidate the evidence base through ongoing, multifaceted health services research (HSR).6, 19-23 Until very recently in HSR, politicians and policymakers defined cost-effectiveness and service efficiency in healthcare solely in terms of cost-reduction and cost containment.6 Recent years, however, have seen a growing emphasis on notions of value deriving from the pursuit of ‘best practice’.6, 24-26 Given the mid and especially postpandemic ravages of the SARS-CoV-2 pandemic on health systems, which brought many institutional health services to the brink of essential collapse,27 it is more than premature at the time of writing to expect governments, politicians, healthcare policymakers, and clinical service managers, to move away from a currently resolute focus on the demand-led, supply-driven basis of healthcare provision, toward the person-centred ideal. Yet the direction of travel, as it were, is away from a solitary focus on the volume of service delivery toward a greater and preferential emphasis on superior patient outcomes, which is to say ‘value’, in addition.28, 29 On the basis of current and accumulating evidence, it is becoming rapidly clear that PCC has the potential to mediate significant changes within a variety of important indices of patient behaviour and healthcare service utilization that are directly ‘resource-impacting’, most of which are associated with an increased quality of care at reduced or contained cost.6, 24-26 For this reason, we urgently need far more intensive health economic evaluations of ‘PCC in action’, and it is clear from the literature that such studies are increasing in frequency and impact. Within, perhaps, a relatively short timeframe, we can therefore expect politicians, policymakers, health services managers and clinicians themselves, to pay much greater attention to the increasing corpus of relevant PCC economic data at their disposal. This, we predict, can only support a deepening implementation of PCC, so that this ‘new way of thinking and doing in clinical practice’ can become an imbedded operational, and indeed fully cost-effective, reality.6, 24-26 If we accept, even provisionally, the persuasive nature of the three justifications/imperatives for PCC discussed in outline above, conceptually separate as they are, but each one needing to be considered with integral theoretical reference to the others, then we arrive at the question: ‘How?’ How do we operationalize PCC? The translation of philosophical theory into operational practice faces many challenges within health services. If successful translation is to occur, then conceptual clarity is critical. For sure, at the time of writing, we are far from having achieved a high order of agreement in this context. What we do have are ongoing debates as to ‘what exactly constitutes PCC’, and how PCC can be understood in varying geographic, demographic, economic and cultural contexts.19 Naturally, all such debates generate differing conceptual understandings of PCC, and thus differing definitions of what PCC is and what it isn′t, and thus differing conceptual ‘clarities’ for methodologically-driven operationalisations going forward. Even a cursory look at the international literature shows that few attempts at conceptual and definitional clarity, for example, have been able to locate empirical sources for their assertions.19, 30 Yet we do not find this observation overwhelmingly problematic. On the contrary, we see it as the natural consequence of a search for more developed understanding in the absence of hard data, through referring in the interim to a variety of the many other sources and types of knowledge and experience of relevance in this very context. Such efforts should continue, and are in our view to be enthusiastically encouraged. But what implications does this situation have for ongoing methodological advancement? It is this that we will now consider. To the question posed, we answer definitively in the negative. A global theory of PCC and its resulting policy would need, as Giusti et al. point out, to accommodate different beliefs and worldviews, and to centre around a common set of human values. This would be an enormously complex undertaking and one greatly complicated by the range of differences that would inevitably be encountered.19 In recognition of this fact, some scholars argue that until the definition of ‘person’, ‘health’, ‘care’ and ‘centre’, are resolved in philosophical theory internationally, given the multiplicity of varying understandings, it is not wise or possible for the field to proceed in terms of ‘hands on’ practice.31-39 Other investigators adopt what they consider to be a more pragmatic position and urge caution in relation to this particular concern. Indeed, we ourselves continue to resist calls for the articulation of a settled definition before methodological advances can be attempted, because to subscribe to the dogmatism of such a reductionist ‘philosophical insistence’ is, we assert, a recipe for an essential stasis. Indeed, in a time where healthcare dehumanization continues to progress rapidly, as indicated by many indices, and clinical services continue to become increasingly siloed as a wholly negative function of relentless super-specialization, key actions must be taken urgently to address such developments. In these circumstances, it is our considered view that the promotion of what is, essentially, stasis, cannot be included among them.6, 16, 40 In a recent and important paper, Mitchell et al.41 note the concerns expressed within the literature that the lack of a clear definition of person-centred care creates problems for its implementation, a conclusion they accept, as do we. Yet, at the same time, these authors appear to argue against a definitive drive to establish the very definitional clarity that many investigators argue is fundamental to rational and sustainable methodological progress. Indeed, Mitchell et al. agree that there are ‘undoubtedly good reasons to give the idea of person-centredness some definite shape and to indicate and illustrate what it means in certain contexts’, given that definitional exercises, by their very nature ‘can help both to critique practice and to steer practice development’, providing, in addition, ‘evaluative frameworks and measures to compare, monitor, and measure healthcare that aspires to be person-centred’.41 The authors' argumentation, which we admit to finding a little convoluted, appears to centre on their concern that overly dogmatic definitions, constructed on summary or unduly narrow understandings of what PCC is and what it isn't, are highly problematic. Here, they worry that claims to represent settled understandings of the concept which have putative immediate universal applicability, thereby relegate other attempts at understanding and clarity to a secondary or tertiary order of relevance. In reaction to such an approach, and in efforts to limit or even preclude it, Mitchell et al.41 advocate ‘vagueness’, a notion somewhat strange in established conceptual theory, based on the perceived risk that the formulation of definitive concepts and definitions could ‘throw the baby out with the bathwater, by unwittingly casting off the very thing that imparts them credence and relevance’. We understand the authors' reasoning, and we do not find at all controversial their suggestion that there are, therefore, many benefits to operating with multiple accounts of person-centredness, some of which will have been formulated with specific uses in mind. In many cases, these will drive technically operationalised methodologies aimed at achieving PCC in specific clinical and related settings and which, as Mitchell et al. acknowledge, will enable practicability and associated measurement exercises within specifically defined contexts.41 The authors' acknowledgement of the value of conceptual and definitional diversity of this type, and the technical approaches that could therefore then be based upon it, guarantees an adaptability of the PCC concept and an accommodation of the very many practical and ethical disagreements about how it should be interpreted, that the authors believe to be essential. We agree. We likewise agree with Mitchell et al.40 that if PCC is ‘vague and varied’ in the way these authors suggest, then its generalizability will be correspondingly limited in direct consequence. While this is a ‘positive’, in that it acts to restrain otherwise unrestrained attempts at the formulation of exclusionary dogmatic concepts and definitions (and the damage that these have the clear potential to inflict on the development of this essentially nascent field of study in the context of contemporary medicine and healthcare), there will nevertheless, we think, be corresponding negatives. Chief among these, perhaps, and as the authors themselves acknowledge, is that the lack of such generalizability will act significantly to complicate valid comparisons of the extent to which person-centeredness has been achieved within differing clinical settings, and thus the ability to learn from such comparisons accordingly. For Mitchell et al.,40 this is a price worth paying, as it were, it seems, since ‘any features that are so general as to apply in all instances of person-centred care are liable to be so empty of specific content as to be relatively unhelpful for understanding or implementing it’. While we disagree with this contention in part, and argue that many key features of PCC are, in fact, immediately common to many understandings of PCC12, 13, 16 —and are thus very useful, cross-applicable, and important indeed—we are in agreement with the authors that ‘making assessments of person-centredness that are not platitudinous means attending to specific features of individuals, healthcare settings and medical practice. The value of generalizability will therefore be relatively limited in such cases’. How, then, to proceed? The authors' concern that nongeneralisability in this context ‘puts person-centred care somewhat in tension with clinical guideline-based approaches to EBM and healthcare improvement’, does not constitute, we think, the problem in real-world clinical practice that the authors appear to imagine it to represent. On the contrary, the almost three decades-long debate on EBM, contributed to in highly prominent fashion by the Journal, has long since won the argument that in clinical practice general scientific knowledge must be particularized to the individual clinical case, meaning the person of the patient.12, 13, 15, 17, 18 The individual person who suffers, therefore, is the ‘final destination’ of science in medicine.3, 4, 12, 17 The previous tension between PCC and EBM, to which the authors tangentially (given its complexity) refer, has to a significant extent been relaxed, as it were, by a largely agreed need for an essential ‘coalescence’ of the key tenets of the two movements, in a resolution of what were previously regarded to have represented fundamentally opposed philosophies of modern medical practice. To be ‘for PCC’ then, is not to be ‘against’ EBM, and vice versa.6, 12, 15, 16, 18 Mitchell et al.41 are, therefore, not advocating a form of stasis. Rather, these authors' argumentation promotes what we will describe here as a ‘many-models PCC’, based on a ‘many concepts PCC’, and it is this approach that, in the absence of a settled universally agreed, empirically-located conceptual basis and resulting definition of PCC (which is likely to take decades to achieve), appears to represent a rational way forward in the relatively short interim. Clearly, when models of PCC are constructed on the basis of this reasoning, and implemented in practice on a simple single trial, or a far wider major basis, then the data and understandings they generate can only contribute directly to definitive progress in the field. Here, it is axiomatic that such models would be subject to given degrees of modification if and/or when additional theoretical insights into PCC, and insights from everyday practice, become subsequently understood and documented. The clear recognition here is that while theory informs practice, so does practice inform theory.40 Moreover, it enables the ESPCH, and many other investigators, to concur and work with those clinicians who remain impatient to accelerate operational progress, and to realize the tangible improvements in patient outcomes that have the potential in consequence to result. It is these clinicians, Asbridge notes, who, when confronted with puristic philosophical objections to progressing PCC in the interim through employing varying concepts and definitions, not untypically assert: ‘You just have to get on with it’.40 The ESPCH has consistently maintained that the successful operational implementation of PCC, by its nature, and via the methodological recommendations we have set out and discuss above, requires a multistakeholder approach, with the full involvement of the whole range of colleagues who collectively constitute what is currently referred to as the ‘modern healthcare ecosystem’. We refer here to clinicians of all types and grades of seniority, to health services managers; to professional and family carers; to social care professionals; to expert patients, patient advocacy organizations and patient charities; to healthcare chaplains; to politicians and healthcare policymakers; to health economists; to members of the pharmaceutical and healthcare technology industries, and to philosophers of medicine and healthcare.6 When all of these colleagues strive to understand each other, and actively collaborate, we come that much closer to making PCC an operational reality, and thus to delivering the common goal of superior clinical outcomes at lowered or contained clinical costs.6 Clinical practice operates on the basis of competency frameworks and codes of professional practice which direct education and training at both the undergraduate and postgraduate stages. Also, professional regulation and revalidation requirements, often onerous and bureaucratic, nevertheless drive changes in practice and the maintenance of standards. For this reason, the ESPCH advocates the revision of current ethical codes and regulatory mandates through the addition of clear guidance which embeds PCC as a necessity and imperative that is integral to clinical professionalism, and not a peripheral ideology or option that is solely associated with an individual style of professional practice. Such developments have the capacity to elevate clinical professionalism from what we have referred to as the ‘lower common denominator’ of legally acceptable, regulator-satisfying, basic technoscientific competence, to a ‘higher numerator’ of person-centred excellence. We assert that the former can only be understood as ‘second rate’ care, while the latter is, for us, incontrovertibly first rate in its nature, raising the bar from basic competence to high excellence.6, 12, 15, 16 Rather than representing an abstract concept, or a form of ‘virtue signalling’ with an associated moral posturing, PCC is in many ways a radical proposition within our current modern health services that have become reductively focussed on efficiency rather than quality, and when depersonalization/dehumanization and silo-isation have become the operational norm, to the direct detriment of patients. The understanding that PCC is not an optional extra but rather an essential, indeed vital, component of healthcare delivery, is at least partially based on acknowledgements of the consequences of its deficits within health services, and the increasing demands from patients for empathetic and compassionate care. In consequence, PCC is now becoming firmly embedded not only within what might be termed term the ‘clinical consciousness’, but also recognized by all those other members of the modern healthcare ecosystem that we describe above, as ‘a new way of thinking and doing in healthcare’ that encourages the pursuit of excellence in the care of patients, surely the cardinal characteristic of authentic professionalism.6, 12, 16 The progress of PCC to date has occurred through a relatively ‘quiet’ evolution, and not through a ‘shock and awe’ revolution, such as that which so characterized the inception and early development of EBM.3-5, 12, 13 In this way, PCC is establishing itself as the humanistic framework in which continuing technoscientific advances in medicine and healthcare can be delivered to patients with the aim of achieving excellence in both process and outcome. In this sense, PCC can accurately be described as ‘the new professionalism’ which returns to clinicians an ambition to treat patients as persons. Throughout this Editorial Introduction, we have considered modern understandings of PCC, its justifications, and the direction in which in our view methodological development and operational implementation should proceed. While the new Section is particularly enthusiastic to receive manuscripts for consideration focussing on the specific areas of study we have outlined, our focus has by no means been exhaustive and we welcome contributions on all aspects of PCC in all of the various publishing formats of the Journal. Authors should clearly mark their papers for the attention of the JECP Section on PCC, and any queries before submission may be discussed with the Section Editor [[email protected]]. The authors declare no conflict of interest. The authors have nothing to report.