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

This chapter argues the need for a paradigm shift to focus health care from a top down fragmented pro-cess driven activity to a user-driven journey of the individual whose health is at stake. Currently many persons/users 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 im-proves the quality of care through adaptable and interconnected provider information and care systems. Information technology, social networking and digital democracy are proposed as major solutions 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 re-viewed literature and translated into clinical knowledge.