Editorial: Communication in chronic care: confronting the evidence challenge in an era of system reform

These are interesting times for those of us in the world of developing knowledge to enhance care for the chronically ill. In the wake of the WHO declaration in 2002 that chronic conditions account for almost half of the global burden of disease (World Health Organization, 2002), we are witnessing a mad scramble across many nations to rethink health service delivery systems such that they reconfigure our conventional notion of chronic illness as the 'poor cousin' of acute and episodic disease so that it may be granted a much more prominent position within the health care family tree. Because the overwhelming cost of failing to deal with chronic disease has finally caught up with health system planners, we now see considerable investment in new models to try to tame the beast as best one can. In this climate of changing priorities, many jurisdictions have become precipitously engaged in significant shifts within their service implementation systems to accommodate new chronic care models, for which there is a concurrent rapid proliferation of attempts to measure and evaluation both cost and effectiveness (Epping-Jordan et al. 2004). In times such as these, we need clear thinking to know how fully to jump onto the system reform bandwagon, and where we might benefit from maintaining a somewhat critical distance. One instance in which such critical reflection seems most essential is the area of patient-provider communication. Although many of the currently popular models of chronic care acknowledge the intersection between the patient and the care provider as the fulcrum of chronic care, they also tend to reflect a somewhat unsophisticated understanding of what one ought to do with it. While various models do pay lip service to the communication intersection as a primary site of assessment, information exchange, monitoring and coaching, all of which are presumed to be contributors to a successful outcome, what it is that is supposed to happen within this communication exchange to steer the patient's illness trajectory toward future success is not at all well known. Or rather, while it is perhaps well understood by some of us, it is not yet confirmable from an evidentiary perspective to an extent that would warrant investment of precious health care resources in its success. And herein lies my concern. 'Chronic disease management' (CDM) has become a convenient collective term for the constellation of approaches for reforming health delivery systems toward addressing the burden that chronic conditions place on society. Among the more popular models are those evolving from Wagner's Chronic Care Model (Gately et al. 2007), Lorig's Chronic Disease Self-Management (Holman & Lorig 2004) and the Shared Care approach popular in some jurisdictions (Smith et al. 2008). Although each model offers its own variation on the theme, collectively they create a set of standardised population based education, support and active monitoring interventions. Within each implementation context, these interventions are being evaluated in terms of available indicators of treatment compliance and lifestyle control, understood as proxies for eventual disease outcomes. Implementation of these models involves restructuring (in the sense of creating certain patient encounters within which aspects of the intervention can be delivered), and re-education (of health care professionals toward an active standardised management approach rather than passively waiting for the patient to get into trouble). Much of the approach can be titrated in dosages of education, support, and monitoring of both behavioural patterns and biomarkers. And it is these 'measurables' that will be attracting the bulk of attention in the compilation of an evidence basis to inform the ongoing effort. If we assume that the level of enthusiasm for health system delivery innovations may depend to a significant extent upon the availability of evidence that they are effective, we can anticipate an ongoing challenge related to how the inherent complexity of chronic illness experience and disease management will be handled within this new frontier. Straightforward evaluation of population based systems requires that they are standardised and there are discrete and agreed upon indicators that can serve as measures of success. Thus the individualisation of care within an illness experience as we now understand it may actually be under some considerable threat in a climate of system change toward an emphasis on managing diseases. While we might wish to be enthusiastic in our support for a system that is now (finally) stepping up to take some meaningful responsibility for the problem, we'll also want to retain a healthy dialogue about what happens when we divert our resources into standardised rather than individually tailored approaches. A generation of qualitatively derived knowledge about what it is like to seek care for a chronic condition from the patient perspective alerts us to the challenge with which standardised population based approaches to CDM may confront us. We know that the array of available intervention approaches to support chronic disease self-management operate differently for different populations of patients because they interact variously within individual lives, preferences and experiences. It is difficult to imagine that a 'dose' of interactive health communication, peer support, or lay education would equivalently support the diversity of experience that makes up our clinical populations in almost any care context. In order to ensure that new models do not entrench systematic inequities that affect subsets of the population, especially those who may be most vulnerable, careful attention to these relevant diversities will be necessary if we are to work within a CDM culture and avoid the homogeneity toward which it may draw us. We require sophisticated and complex integrated research methodologies to help us effectively distinguish variance rather than merely documenting common patterns, so that the value of individualisation and personalisation remains central to our thinking. We need the kind of knowledge base that can serve as a moral compass, allowing us to embrace the added value of these new population based approaches without sacrificing a primary orientation to the individual person as the host and steward of those diseases we seek to manage. From the extant 'patient perspective' scholarly work available to us, we do know something about the kinds of diversities that will be relevant to this evolving knowledge, and our research has illuminated the kinds of implications we must keep top of mind. Important among them is age. Research has clearly demonstrated that there are important cohort differences, not only in the physiological implications of aging and their relationship to chronic illness symptomatology, but also in such factors as understandings of illness dynamics, expectations around medical intervention, and confidence in strategic approaches (Yu et al. 2008). An example of this might be confidence with interactive technologies – something that is ubiquitous among younger generations but variously penetrating our oldest generation. While access to information was a key communication dimension within an earlier era, making sense of vast quantities of it has become the more modern communication priority. The role of the professional health care provider as custodian of information has been all but surpassed by the roles of interpreter and guide. In this context, it seems evident that information communication best practices must involve accommodation to individual needs related to both access and interpretation. And the implications are serious. While standardised information approaches effectively serve some patients, we know that they can become a source of iatrogenesis for others. Another diversity that is prominent in research from the patient perspective is culture. We know that culture is a powerful factor in shaping values, beliefs, attitudes and expectations about illness and serves as a foundation for health-related practices. It shapes the intricate dynamics around such matters as individual autonomy and the appropriate role of patients in relating to health care professionals. A prominent example of this lies in the matter of informed consent, something that is enacted within the patient-provider communication encounter on an everyday basis (Oliffe et al. 2007). If we understand patient autonomy to be a fundamental right, and consider truth telling an organisationally sanctioned risk management approach, we often bombard individuals with information that is culturally quite unacceptable. In so doing, we may play havoc with family dynamics around such matters as when and how serious illness is discussed. Thus, when we standardise any of the informed consent approaches within our communications, we threaten the core cultural safety of our care context. And when we do that, we inherently limit our capacity to support the long trajectory of learning to live well with disease that is always essential to our ultimate goal of better outcomes. A third obvious diversity is the distinct diseases that represent the constellation of conditions we refer to as 'chronic illness'. While certain fundamental principles of communication may transcend all contexts (such features as respect and engagement come to mind), each chronic condition presents us with different social and attitudinal dynamics that play a powerful role in interpreting how messages are received within the communication encounter (Thorne et al. 2004). For example, patients affected by diseases such as fibromyalgia or chronic fatigue syndrome, for which the etiological origins are under dispute, may be highly offended by communications related to their psychological state. In contrast, those with diseases whose biological base is well accepted, such as multiple sclerosis or arthritis, may interpret such questions as a thoughtful validation of the strain associated with their conditions. Similarly, inquiries into lifestyle and health practices may be quite differently interpreted by patients whose diseases fall into the category of conditions in which blame might be construed, such as type 2 diabetes, than by others, for whom such inquiries might be seen as confirmation that living with chronic illness is considerably more complex than identifying an appropriate medical intervention. A fourth example of a key diversity recognised for its powerful influence on chronic care communication practices is social standing (Williams 1989). While age, culture and disease permit certain useful categorisations, social standing is considerably more complex, in that it involves a range of fluid and dynamic features associated with how each participant in the communication context understands his or her position in the world. Patient perceptions of relative social location can have powerful effects upon such key factors as confidence, self efficacy, freedom to speak up, and sense of social equality with health care professionals. While clinicians commonly recognise this particular variable as powerfully shaping communication at all levels, it is among those that seem resistant to meaningful taxonomisation. Nevertheless, patients do need to feel 'known' and respected within the health care delivery context in order to engage productively with it, and for this reason, skilled clinicians strive always to ensure that communications are tailored toward individual circumstances that take social standing issues into consideration. At this stage of our knowledge development, communication research from the patient perspective has served as an important source of insight into why these kinds of patient diversities matter in the delivery of chronic illness care. It has fostered an evolving recognition that even slight and subtle variations within the care context can exert a powerful influence upon the course of illness and eventual outcomes for individuals. In the current climate of system reform, this kind of patient perspective communication research may be critically important. Without documentation, analysis and synthesis of that which can be tapped from the subjective and interpretive elements of illness within an increasingly refined understanding of evidence, the pressure to conform to standardised population-based interventions may become crushing, particularly in the current context of global health worker shortages, in which the most efficient use of human resources will be the order of the day. The evidentiary context within which these new chronic disease management systems are currently being evaluated is one in which outcomes are extrapolated on the basis of a handful of discrete and standardise measures. Most outcome studies have little or no capacity to interpret the interactions they find between variables, and even less capacity to account for that larger and amorphous entity we call 'context'. The preponderance of published evaluation research reflects relatively short term outcomes, since the farther out one extends from the target intervention, the more complicating and confounding the possible variables. Thus, those of us committed to a wider angle of vision in the study of what chronic illness knowledge ought to include have a great deal of work to do in refining our research methods as well as expanding our synthesis capacities, such that we can play a meaningful role in the analysis of what evidence can tell us at the system level. The quantitatively derived body of evidence will flow directly from the models that have been generated, favouring standardised interventions and discrete proxy outcome measures. Therefore, in my view, we also need the corrective of strategically designed and highly rigorous qualitative work to 'glue' those discrete pieces of knowledge together in an interpretive manner that will prevent undue misinterpretation. Qualitative work into understanding the communication challenge in chronic disease management is an ideal context within which to surface patient perceptions, drill down into the attitudinal and ideological foundations of service delivery approaches, and critically interpret the range of meanings that may be associated with the discrete measures that are extracted within the larger evidentiary project. A coherent research agenda in this regard will keep us on target for illuminating that patient-provider intersection and what explains both its successes and its failures. Without a robust and comprehensive body of evidence pertaining to the power and the complexity of communication in chronic illness care, it may become quite difficult to resist the full force of the standardisation agenda within a challenging economic climate. There is a great deal that can and should be meaningfully changed within our conventional way of doing business. However, the choices we make must always be predicated upon the assumption that caring for people is quite a different proposition than is caring for widgets.

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