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Engaging the patient with HCV and Nash disease: a case study in 10 healthcare organizations in Italy


Lucia Ferrara ,

Cergas SDA Bocconi, Bocconi University, IT
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Angelica Zazzera,

Cergas SDA Bocconi, Bocconi University, IT
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Valeria D Tozzi

Cergas SDA Bocconi, Bocconi University, IT
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Over the last decade, increased attention has been placed on measuring and improving the health care experience of patients. Patient experience is an integral component of service quality and is increasingly recognised as one of the three “pillars of quality in healthcare” alongside clinical effectiveness and patient safety. Despite the complexity surrounding which definition to embrace or which components/constructs to measure, there is general agreement that patient experience in a health care context is formed during the moments when the operation (health service) and consumer (the patient) meet. The series of encounters and consecutive events or steps (activities, interventions, or staff interactions, for example) can be viewed as the patient journey or process of care.

Patients living with complex chronic diseases typically receive care from many providers and move frequently within health care settings, so understanding the full impact of a disease on patient experience, in its widest possible context, is central. Gaining a clear picture of the entire patient journey, beginning with characterizing the initial impact of the disease and then mapping the pathway to diagnosis, is essential to identify the critical challenges that patients and their families face while on the road to discover and receive effective treatment and care.

The paper used a customer experience mapping in order to understand the journey of patients with HCV (Hepatitis C Virus) and NASH (Nonalcoholic steatohepatitis) within 10 healthcare organizations (hospital trusts and local health authorities) in Italy. The overall aim was to gather information on the real patient journey and on the health and social services used in order to analyse what service users really think and feel, moving through to identify the key conditions for improving the care management of chronic patients.

We employed mixed methods in order to exploit a multiple case-study analysis. These included a literature review of theoretical frameworks to map the patient journey and an in-depth analysis of 10 integrated care pathway conducted through local documents analysis, focus groups with professionals and patients, interviews with key managers of the services, and a survey distributed to patients and caregivers.

Poor communications, incomplete transfer of information, inadequate education of health professionals, limited access to expertise services, and the absence of a reference contact to ensure continuity of care all contribute to patient dissatisfaction along the journey. The engagement of patients has a central role in the change process within healthcare organizations especially for the definition of integrated clinical pathway.

The project underlined firstly that healthcare organizations should respect and take into account patient perceptions, preferences and expectations and consider their emotional journey while defining the integrated clinical pathway; secondly, that the experience of patients could be a driver to implement operation and strategic models to redesign the integrated care pathway and finally, linked to this, that there is a growing need to plan strategies within the healthcare organization to internalize the point of view of patients within the broader clinical and managerial process.

How to Cite: Ferrara L, Zazzera A, D Tozzi V. Engaging the patient with HCV and Nash disease: a case study in 10 healthcare organizations in Italy. International Journal of Integrated Care. 2019;19(4):233. DOI:
Published on 08 Aug 2019.


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