JMIR Publications

ABSTRACT

Background:

Seamless access to distributed patient records at the point of care is essential for integrated care. However, this access is challenged by the routing of patients with medical complexities across the healthcare system, leading to information fragmentation. Although the problem is well known, there remains limited knowledge and systematic approaches to mitigate the gaps in information logistics.

Objective:

This study proposes a conceptual information architecture framework for patient-centric pathways, facilitating integrated inter-organizational information logistics.

Methods:

A design science research study was conducted to systematically construct knowledge and artifacts. Healthcare contacts from fourteen patients with combined mental and physical health conditions were analyzed. One patient’s contacts from 2005 to 2024 were selected as a representative user scenario. This user scenario, along with a stakeholder analysis and root causes, formed the basis for explicating the problem. To guide the translation from the problem into high-level artifact requirements, a conceptual information architecture framework with information logistics architecture was developed, drawing on architectural thinking and Information Governance, aligned with the goals and principles of the Valkyrie research project. A Use Case for an envisioned system scenario was created to demonstrate the artifact’s feasibility according to the functional requirements.

Results:

The proposed architecture framework significantly contributes to the knowledge base by comprehensively addressing the complex problem of inter-organizational awareness and access, including the vital aspect of sharing patients’ voices. It provides a systematic approach to mitigating structural and behavioral complexity within healthcare, directly counteracting information fragmentation that compromises patient safety, quality, and increases costs and clinical burden. Crucially, the framework shifts from an application-centric to an information-centric architecture. This involves decoupling information from traditional application constraints and utilizing small, secure information tokens (containing metadata, clinical codes, and location data), directly addressing the root causes of the defined problem: "lack of awareness" and "lack of access." Advantages include faster updates for patient-centric pathways and reduced security burdens compared to full record duplication. The embedded location codes within these tokens maintain essential links to distributed patient records, enabling comprehensive access for clinicians and patients when required. This approach differentiates the framework from existing methods and holds potential for data-driven healthcare solutions.

Conclusions:

The architecture framework presents a novel approach to the inter-organizational information logistics challenges compared to earlier access methods. The Use Case addresses the problem definition from clinical and patient integration viewpoints. Researchers from clinical, sociological, and technical fields participated in this study. However, more research is needed to enhance the relevance to practice, including improvements in health information quality, rapid evaluations of early artifacts, and greater involvement of stakeholders in the future design and evaluation process.