Patient Journey Record Systems (PaJR): The Development of a Conceptual Framework for a Patient Journey System

Patient Journey Record Systems (PaJR): The Development of a Conceptual Framework for a Patient Journey System

Carmel M. Martin, Rakesh Biswas, Ankur Joshi, Joachim P. Sturmberg
DOI: 10.4018/978-1-60960-097-6.ch006
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This chapter argues the need for a paradigm shift to focus health care from a top down fragmented process driven activity to a user-driven journey of the individual whose health is at stake. Currently many person/patients express needs that are often overlooked or not understood in the health system, and the frontline care workers express frustration in relation to care systems that prevent them from optimizing their care delivery. We argue that complex adaptive systems and social constructionist theories provide a link for knowledge translation that ultimately will lead to improved health care and better personal health outcomes/experiences. We propose the Patient Journey Record System (PaJR) as a conceptual framework to transform health care so that it supports and improves the experience of patients and improves the quality of care through adaptable and interconnected provider information and care systems. Information technology, social networking and digital democracy is proposed as a major solution to the need to put the patient and their journey at the centre of health and health care with real time shaping of care to this end. Placing PaJR at the centre of care would enable patients, caregivers, physicians, nurses, allied health professionals and students to contribute to improving care. PaJR should become a ‘discovery tool’ of new knowledge arising from different types of experiences ranging from the implicit knowledge in narratives through to the explicit knowledge that is formalized in the published peer reviewed literature and translated into clinical knowledge.
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Referring to the patient's journey is a very appropriate start. Travellers have always needed help. How far must I travel? What route must I take? Are there signposts along the way? Is there a map, or must I find my way from landmark to landmark? Is there someone to act as a guide, or must I act as pilot and navigator, and who is in charge? Will it hurt if I 'bump' into something on this journey? What happens upon arrival - will I be a complete stranger in a strange land? Posted Nov 18 2008 12:17am


The Patient's Journey

The patient journey concept has been an emergent phenomenon building on the notion of patient centeredness over the past 15-20 years. It has emerged from the dynamics of balancing the biomedical model with the biopsychosocial model, and balancing the acute care models with chronic care and community oriented patient centred models (Figure 1) (C. M. Martin, 2007). The patient journey concept recognizes that people make journeys through different stages of health and illness, through different parts of the health care systems, associated with different emotional and physical experiences (C. M. Martin & Sturmberg, 2006; Sturmberg & Martin, 2006). The individual patient journey is shaped by the systems in which they live, which are strongly influenced by the social and non-social determinants of health. A range of compelling evidence from Canada and other countries indicates that the social and economic circumstances of individuals and groups influence their health status and mortality as much as or more than health care. These circumstances affect the success rate of interventions to change personal health behaviour, such as smoking and diet, or of improved outcomes of chronic disease management. Addressing health inequities is strongly associated with the improvement of health care outcomes (Martin CM & Kaufman T, 2008).

Figure 1.

Archetypal patient journeys underpinning the patient journey record system (PaJR)


This patient journey takes place in a western system where there is universal access to general practice and comprehensive health care. The patient journey starts from birth and early life and ends in death. The journey of the individual is through all stages of life, from wellness and risk to disease and illness. The personal nature of this unique individual journey encompasses biological, psychological, social domains of experience.

Individual journeys occur with support and interdependent relationships within their intimate family networks, their social networks of peers, friends and colleagues. Self care and the work of managing health and illness increasingly takes place with informational and disease management support from chronic disease management programs. Patients are increasingly connected through patient interest groups, blogs and other social networking sites. Individuals are located within their social network, their culture, their social and economic infrastructure. Such systems are complex and often unpredictable, thus narratives are often the best way for individual and relevant others to make sense of their journey.

The general practitioner and the primary care team have a longitudinal journey with their patient through phases of health and illness and stages of care including health promotion and prevention, risk management, diagnosis, treatment, self-management and self-care. Such care pathways pass through different care sectors from primary and community care to secondary and tertiary hospital based care. In this system continuity of care based on relationships, information and connected management strategies. Community, secondary and tertiary care providers have episodic and sometimes long term care relationships. Doctors and care providers can increasingly network and learn from each other's experiences through traditional continuing medical education, but boosted by the immediacy of social networking.

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