The social construction of chronicity--a key to understanding chronic care transformations

The purpose of this paper is to argue the importance of contemporary analysis of the modern social construction of chronicity--encapsulating the world views of the chronically ill, and the medical and health system constructions of chronic disease, through the nature of care for chronic conditions. It is argued that chronic diseases are themselves, socially constructed, despite widely accepted disease classification systems. Thus, there is a need to examine how different ideas have permeated our clinical and health system developments and their social context and vice versa.

We examine historical ideas, theory and evidence about the tensions in social construction of chronic illness by those afflicted and the responses of society, the medical and health professions and increasingly the public and private institutions that shape health care. This is with the background of major differences in the two cultures that create knowledge: those based upon argument and intellectual logic--hermeneutic, and those based upon 'objectivist' empirical science, often called heuristic. Evidence-based medicine (EBM) is the flagship of disease management, increasingly narrative-based medicine and other similar genres are becoming the pragmatic face of social constructions, yet sit in juxtaposition without synthesis. A third culture has emerged of scientific intellectuals who straddle these cultures and in health care their public face is 'mixed methods'.

Recent cases of modern ideas about improving chronic care were reviewed. We found that despite developments of social theory, the world view of the chronically ill exerts small influence in health system redesign, apparently dominated by chronic disease models. Confusion remains within health system reforms as to the social construction of chronicity--chronic disease, chronic condition or chronic illness and chronic care transformations. The role of Primary Care remains ambiguous straddling disease and illness. Radical redesign of health systems is taking place without an understanding and discourse about the nature of their construction. Ad hoc eclectism with unquestioning adoption of the dominant EBM paradigm is driving a new health culture based on disease-based performance incentives, which is intrusive beyond the medical model and pays little attention to narratives of illness and even less to the whole social reconstruction of illness and wellness.

Health care systems cannot afford to avoid, and should actively embrace the critiques of social theory and analyses in the transformations of health systems to improve chronic care. Creative tensions between empirical and intellectual critique, and a synthetic middle ground are likely to lead to more realistic and innovative approaches spanning the nature of chronicity and the transformation of Primary Care.