Co-designing an Integrated Care Network With People Living With Parkinson’s Disease: From Patients’ Narratives to Trajectory Analysis

Abstract

An integrated care model for people living with Parkinson’s disease (PD) offers the promise of meeting complex care needs in a person-centered way that addresses fragmentation and improves quality of life. The purpose of our research was to co-design a care delivery model that supports both social and medical care from the perspective of patients and care partners. In the first step of our co-design approach, participants from five countries were invited to share their experiences of living with PD during a narrative interview. A qualitative analysis of these narrative interviews based on the Corbin and Strauss model was done to map out patients’ trajectories. Three typical trajectories were identified: (a) the “unpredictable” trajectory, (b) the “situated” trajectory, and (c) the “demanding” trajectory. Based on the analysis of these trajectories, we were able to integrate various patient experiences into the design of an integrated care network.

Co-Designing an Integrated Care Network with People Living with Parkinson’s Disease: A Heterogeneous Social Network of People, Resources and Technologies

“…At the heart of the future integrated care network are tailored educational resources that address the needs of different patients’ trajectories. Trajectories that we have identified in the early phases of the co-design process [ 22 ]. These educational resources will play an essential role in supporting the self-care process throughout the patient journey.…”

“…The integrated care network designed by the participants is composed of three interconnected networks, where key components play an important role to support personalized care in PD. The integrated care network co-designed by the participants must be constituted, made and remade over time to evolve with the patient trajectories ( Figure S5 [ 22 ]).…”

“…For this article, we will be sharing the results from the Canadian study specifically. While the first two phases of the approach helped prepare the groundwork for the collective effort to capture patients’ and CP’ stories to identify care trajectories [ 22 , 23 ], it is in this third phase that respondents participate in design workshops to help develop an improved model of integrated care. At this stage of the research project, each country developed a “journey map” and a table identifying main touchpoints (an important point of contact with a person or service at the time of the event), key resources, and technologies to support integrated care.…”

Measuring Quality of Life in Parkinson’s Disease—A Call to Rethink Conceptualizations and Assessments

“…In accordance with the subjectivist understanding of QoL, modern PD care aims not only to alleviate symptoms but also to adopt a holistic view of patients’ individual psychological health and living condition [ 23 ]. This is not least reflected in the process of healthcare evolution towards integrated care models that address patients’ needs holistically and take individual factors, such as living circumstances, into consideration [ 4 , 5 , 6 , 7 ]. Measurements of HRQoL and QoL are crucial to PD-related healthcare research, audit, and practice and are sought through numerous survey instruments [ 24 ].…”

“…Given its incurability to date, modern therapeutic approaches and social efforts primarily strive at maintaining and promoting patient-related quality of life (QoL) [ 3 ]. It has evolved as a fundamental parameter for clinical follow-up and it poses one of the most important endpoints in scientific and economic evaluations of emerging care models [ 4 , 5 , 6 , 7 ]. It is therefore of utmost importance to grasp concepts of QoL in a meaningful way.…”