The increasing number of patients affected by chronic conditions leads healthcare organisations (HCOs), from primary care clinics to integrated health systems, to redefine the process and scope of their delivery system. One key feature is to be more patient-centred, i.e. by giving organisational responses to all demands expressed by patients along the entire care pathway and their potential environment (e.g. hospitalisation, ambulatory care, nursing home and home) [1].
The incorporation of all patient demands into the healthcare delivery system poses a challenge. Healthcare delivery systems are mainly designed around diseases and other clinical conditions [2–4]. Healthcare professionals traditionally translate patient demands into clinical needs based on their medical knowledge (one such example is precision medicine where the molecular characteristics of the patient are identified for defining targeted therapies) [5–7]. However, other “non-clinical demands” exist. For instance, the social determinants of a patient (e.g. social isolation or financial barriers to care access) can lead to demands being addressed during management of the care pathway (e.g. transportation, home meal delivery services). The integration of these psychosocial needs is a current issue for healthcare delivery systems, particularly for vulnerable patients whose social situation impacts their clinical condition. This can lead to targeting the population in an attempt to identify high need-high cost patients [8]. In addition, patients also express lifestyle preferences and demands according to their behaviour patterns and values, which Patient Centred Care (PCC) experts [9–11], have often claimed to be ignored in care delivery systems. The total lack of global consideration for these various types of demands can result in a fragmented healthcare system and inefficient use of meagre resources [3, 12]. In order to initiate the design and implementation of a demand-driven organisational model, it is necessary to consider and study the content of all non-clinical demands and their association with clinical demands, an area that has hitherto been investigated to less of an extent [13, 14].
The purpose of this article is twofold:
(i)It initially aims to assess the importance of each demand expressed by patients and the extent to which these demands are taken into account in managing their care pathway. Two categories of demands are defined in support of the analysis: clinical (C), and non-clinical (NC) demands and it is assumed that, as a general rule, greater consideration is given to clinical demands as opposed to non-clinical demands.
(ii)The article then seeks to investigate the content of specific non-clinical demands in greater depth.
We use the concept of “demands” rather than “needs” or “unmet needs”, two concepts that are often difficult to define, depending on the context in which they are applied and the disciplines involved [15]. The notion of “demands” departs from these concepts in two ways. Firstly, we concentrate on demands perceived as opposed to expressed, normative and comparative concepts of need [16]. Secondly, demands point to a lack of well-being which might (but need not) indicate an unmet need for care. It follows that the concept of demand does not involve an express need for care. Demands are only a starting point for looking at what patient personally perceive as difficulties and complaints [17].
This research focuses on two Health Care Organisations (HCOs) specialising in oncology. Cancer is a significant example of chronic care, illustrating the need to consider various patient demands. Indeed, cancer patients who are increasingly exposed to chronic conditions are involved in care pathways, which include numerous return trips between home and the health care establishment. They are also experiencing stressful changes in their general health throughout the care continuum. This involves regular updates in the management of their care pathways and ongoing consideration of the interaction between clinical and lifestyle demands. Moreover, the two selected HCOs have developed innovative patient pathways based on dedicated nurse navigators (NNs). The principal role of NNs is to co-ordinate patient management activities. As pathway ambassadors, they are in direct contact with patients before, during and after periods of hospitalisation. They must, therefore, pay close attention to all expressed and non-expressed patient demands along the entire care pathway. In so doing, they provide interesting areas of exploration for understanding which demands patients can express along their care pathway and how these are taken into account in the HCO healthcare delivery system.
The first step was to enhance the understanding of the importance of both clinical and non-clinical demands and how these are incorporated into current modern health care delivery systems. We illustrate the usefulness of this analysis for delivering care and services at patient pathway level, providing additional insight into consideration of non-clinical demands in the patient-provider relationship during the clinical decision-making process [18, 19]. The second step was a deep empirical identification and description of non-clinical demands. It reveals a variety of demands, including information about transportation from home to HCOs, athletic and sporting activities during a treatment phase, and compliance with religious values.