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HELSEVEL-Gode og effektive helse-, omsorgs- og velferdstjenester

PATHWAY: A toolkit for managing and communicating patient pathways

Alternative title: PATHWAY: Verktøy for å beskrive og kommunisere pasientforløp

Awarded: NOK 12.0 mill.

Patient pathways have become an important concept within healthcare, and is used by professionals with different backgrounds, for example clinicians, coordinators, and technologists. The lack of an overall framework for patient pathways has resulted in a number of non-standardized descriptions and definitions, and clarifications of concepts rarely occur. A patient pathway is often defined as a chronological description of the patient's encounter with the healthcare services. However, in practice, pathways are mostly used by hospitals to ensure that patients receive treatment within given target times. Most pathways involve one institution only and are rarely patient centred. Pathway's vision is to develop a theoretical foundation and a visual modelling language for specifying, developing, and communicating patient pathways. Pathway departs from a patient-centric perspective, and we will actively involve patients and patient organizations throughout the research activities. Besides healthcare personnel, we will work with two patient groups: patients with multiple sclerosis, a chronic, lifelong neurological disease, and patients with cancer. This is not only to capture different types of pathways, but also to study variations within groups. The goal is to develop methods and tools that support all types of pathways and contributes to well-coordinated and satisfying patient experiences. In this project we will start by examining the patients' experience of their pathway, and which factors they experience that promote and inhibit a coordinated pathway. In addition, we will map out what their specific pathway looks like using methods such as self-report of encounters with the services and interviews. We start by studying MS patients' pathways. Per Sept. 2021, we are working on planning group interviews / workshops and a pilot study where we will test techniques that patients can use to document their course. We continue to work on ethical approvals of this sub-study. We are currently recruiting a postdoctoral fellow funded by the project. A PhD-fellow is already recruited and employed at Aalto university. The result of the project will be a toolkit for precise, visual models of patient pathways that will make it easier to achieve a common understanding and communicate across different professions. Furthermore, we will create tools for communication directly towards patients. Pathway is led by SINTEF Digital, and the partners are the University of Oslo and the University of Aalto, Finland. We will conduct studies at the university hospitals in Oslo and Helsinki and compare results across disease groups and countries. The toolkit will be shared publicly and promoted through seminars.

Patient pathways are in-house tools for hospital staff. However, the lack of a unifying framework for pathways has resulted in a plethora of non-standard descriptions, definitions, and evidence. PATHWAY's vision is to establish the knowledge needed to manage and communicate patient pathways using precise models and methods. The overall project objective is to develop the PATHWAY framework consisting of a theoretical fundament, a visual multi-layered modelling language, methods, and tools to support description, design, and management of patient pathways. While patients often find the medical treatment excellent, research has shown that they experience poor coordination and information exchange among the healthcare actors. This highlights the need for new approaches to manage and coordinate patient pathways in the healthcare system. Based on a strong involvement of users, we will investigate patient pathways from the healthcare organizations' points of view but also through longitudinal studies of patient journeys on an individual level. User needs will inform the development of the modelling language. The modelling language will cover several process layers like the patient's direct contact points and actions, clinical and logistic workflows. The modelling language will be evaluated with several target groups for various purposes within and across disease groups, health organizations and health regions in Norway and Finland. We we will explore how the framework can support direct communication towards patients for increased predictability and patient empowerment. The outcome of the project is a toolkit for precise, visual representations of patient pathways that will ease communication and provide a common understanding among health professionals. A handbook with guidelines and best practices for managing and communicating pathways will also be provided. The research partners are SINTEF Digital, University of Oslo, and Aalto University, Finland.

Funding scheme:

HELSEVEL-Gode og effektive helse-, omsorgs- og velferdstjenester