Towards Platform Solutions in Care Coordination - Identifying Occurrences of Fragmentation in Parkinson’s Disease Care

Context
Preventing fragmentation of care pathways for chronically ill patients requires integration and coordinated actions. This study focuses on the identification of fragmentation occurrences in Parkinson's disease (PD) care in the Finnish healthcare context. Fragmentation is defined as a situation where the totality of care is divided into several parts that do not communicate or adjust to each other. As the incidence and severity of PD symptoms vary highly, the coordination of care requires special attention. We identified fragmentation from a multi-provider perspective with the purpose of designing socio-technical solutions for integration and coordination.

Methods
A constructive research methodology is used. First, a detailed description of an illustrative PD patient journey was explicated through expert interviews and national Current Care Guidelines. Building on this investigation, the key care participants were identified and their roles, relationships, and communication practices regarding PD care were mapped. Second, informants (N=10) were selected using theoretical sampling to cover the relevant care participant types, representing public, private, and third sector service providers. Data was collected through individual and semi-structured interviews around four main themes: 1) emergence of care needs; 2) shift of the caregiving responsibility (hand-over in); 3) decision-making before care tasks (set-up); and 4) the transfer of caregiving responsibility (hand-over out). The data was processed with simultaneous and thematic data analysis including continuous comparison. Two focus group (N=8) discussions were arranged to validate the initial insights.

Results
Our results indicate that fragmentation in PD care occurs in four themes: 1) creating, utilizing, and communicating the care plan; 2) locating and updating prescription information; 3) patient’s motivation and compliance to care; 4) communication from one caregiver to another, and from caregiver to the patient and their family members. Unifying issues across these themes are the lack of system-level integration, and the insufficient use of automated decision-making support and communication. Care plans do not update automatically; manual updates, searching, and communication of care plans may result in the loss of relevant information. Furthermore, decision-making is clouded by information overflow and multi-channel forms, rendering the overall picture of a patient's condition unclear. From the patient’s perspective, this confuses communication between the parties involved and hinders the implementation of the care plan.

Discussion
Building on the identified fragmentation themes, we can develop solutions that support both the integration of PD care services and systems, and coordination between PD care participants. In particular, we believe that platform business economy offers means to tackle the reviewed challenges. A single service provider approach is not adequate, but an interdisciplinary network offered by the platform ecosystem is needed. Complementary roles and a shared logic are central in the development of the proposed platform solution that would automatically update patient records with actionable and real-time knowledge to alleviate fragmentation. This would make the care plan visible and intelligible to the necessary parties. The responsibilities of the platform cover the facilitation of PD care plans, maintaining up-to-date information, and simplifying information that supports decision-making. Further research on the governance structures of such platform ecosystems in healthcare is needed.