Abstract
Background:Cross-sectoral coordination of treatment plans and efficient management of patients with chronic diseases and co-morbidities are of great importance. In rheumatoid arthritis (RA) it is essential to orchestrate information available for a patient at various locations, to allow (cost) efficient data use, to optimize management processes and to avoid redundant diagnostics. The information and communication platform developed in the Horizon2020 funded PICASO project (www.picaso-project.eu) supports the management of patients and their data along the continuum of care, consisting of hospitals, outpatient departments, practices, other health service providers via remote health monitoring. The platform might empower patients to improve their self-management of their illnesses.Objectives:What technological expertise and resources do RA patients and physicians have, who are willing to participate in a proof-of-concept study using a modern ICT platform? What is the user satisfaction? What are platform`s clinical implications?Methods:PICASO pursued a user-centered design approach. Platform`s user requirements were determined through workshops and interviews with physicians from various disciplines, patients and other stakeholders in the health care system (e.g. data protection officers). The development was accompanied by so-called “expert walkthroughs” to ensure a user-friendly design. An evaluation concept assessing the usability of the applications, user satisfaction and clinical relevance of the platform was part of the 6-month proof-of-concept study with RA patients and their physicians (rheumatologists and family doctors). A positive ethics vote was obtained.Results:111 user requirements were identified and used to develop the platform. Conformity with the GDPR as well as national regulations were precisely adhered to. All developments are based on the new ‘Fast Healthcare Interoperability Resources’ standard enabling data exchange with other software systems in the healthcare sector. This offers many advantages, e.g. a semantic model for describing the smallest units in the health care system (e.g. medication intake times, diagnostic procedures). Thus information can be linked and made available across sectors. Data can remain with the data owner and role-specific data access is ensured.30 RA patients (80% female) participated, mean age was 58.6±10.8 years, disease duration 12.6±8.5 years, DAS28 2.6±0.9, average number of comorbidities 3.0±1.6. Patients’ IT-experience was heterogeneous. After 6 months evaluations showed a good platform acceptance with an overall rating of 2.3±1.1 (n=27, Likert scale (LS) 1-6) and evaluation of ‘ease of use’ at 2.3±1.2 (n=27, LS 1-6). Usability tests showed that for patients the presentation of (1) tasks to be performed for the management of their disease, (2) results from their remote health monitoring, and (3) patient-reported outcome instruments in a dashboard was clear and easy to understand. Time required for documentation and daily tasks was rated as appropriate by 75.9% of the patients. No major technical problems or impairments due to RA where experienced when using the dashboard. 8 physicians (37.5 % female) participated in the evaluation; overall the platform was rated at 2.2±0.5 (LS 1-6).Conclusion:The platform offers cross-sectoral orchestration of patient data and thus innovative capabilities for modern management processes (e.g. treat-to-target, tele-monitoring). The PICASO platform is available for RA patients as well as for other chronic diseases.Acknowledgments:This project received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 689209.Disclosure of Interests:None declared
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