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Orchestrating the development of a sustainable network IT solution for a research network: qualitative participatory multimethod design

  • Background Practice-based research networks (PBRNs) rely on sustainable and interoperable IT infrastructures to support coordination, data management, and long-term collaboration across geographically distributed primary care practices. Large federated initiatives, such as the German DESAM-ForNet (Initiative of German Practice-Based Research Networks) program, face substantial sociotechnical challenges, as diverse user groups, heterogeneous local systems, and multiple governance levels must align around shared digital solutions. Objective The aim of this study was to design and evaluate a participatory, consensus-driven process for developing a sustainable and interoperable IT solution that supports the coordination of multiple regional PBRNs, and to identify the sociotechnical factors that influence how such a process unfolds. Methods A qualitative participatory multimethod design combined an iterative consensus-based IT development process in a central working group, interdisciplinary domain-driven design workshops (N=40 stakeholders from 6 PBRNs), and qualitative content analysis of internal documents (2020‐2025). Members of the IT working group were nominated by networks based on IT responsibility and strategic involvement; workshop participants represented general practitioners, study nurses, researchers, and coordinators. Documents (meeting minutes, workshop artifacts, and decision logs) were coded inductively by 2 authors to trace sociotechnical dynamics and decision trajectories. Results The analysis revealed pronounced differences in IT ambitions, resources, and established practices across the 6 PBRNs (ranging from 2 to 90 person-months), which resulted in divergent expectations and uneven readiness for joint development. This heterogeneity—spanning objectives from simple REDCap (Research Electronic Data Capture; Vanderbilt University) databases to comprehensive digitization strategies—necessitated network-specific bounded contexts within a federated architecture. Through iterative development, stakeholders reached consensus on 6 core use cases (base data management, screening or recruitment processes, study or event participation tracking, management of event participation, accreditation procedures, and standardized communication or data exchange) and 2 national proofs-of-concept: quarterly key performance indicator reporting and pseudonymized practice queries based on a shared core dataset. This collaborative process culminated in a 3-tier practice relationship management infrastructure that integrates local autonomy with central metadata management and connectors to the Medical Informatics Initiative and REDCap, and was endorsed by the steering committee as a scalable compromise balancing interoperability and data sovereignty. Conclusions The study shows that developing a national, interoperable IT infrastructure for PBRNs depends as much on social and organizational alignment as it does on technical solutions. Iterative participatory collaboration, transparent governance, and early stakeholder engagement were essential for building shared understanding and trust. Strengthening these relational and organizational elements will be crucial for sustaining future implementation efforts and fully realizing the potential of federated data infrastructures in primary care research.

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Metadaten
Author of HS ReutlingenThies, Christian
URN:urn:nbn:de:bsz:rt2-opus4-62878
DOI:https://doi.org/10.2196/82952
ISSN:2561-326X
Published in:JMIR formative research
Publisher:JMIR Publications
Place of publication:Toronto
Document Type:Journal article
Language:English
Publication year:2026
Tag:PBRN; data sharing; health informatics; health information technology; health services research; interoperability; practice-based research networks; primary health care; screening; stakeholder engagement
Volume:10
Page Number:12
Article Number:e82952
DDC classes:610 Medizin, Gesundheit
Open access?:Ja
Licence (German):License Logo  Creative Commons - CC BY - Namensnennung 4.0 International