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A qualitative study of design stakeholders' views of developing and implementing a registry-based learning health system.

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Campbell, Anne 
Chang, Trillium 
Martin, Graham 
Georgiadis, Alexandros 


BACKGROUND: New opportunities to record, collate, and analyze routine patient data have prompted optimism about the potential of learning health systems. However, real-life examples of such systems remain rare and few have been exposed to study. We aimed to examine the views of design stakeholders on designing and implementing a US-based registry-enabled care and learning system for cystic fibrosis (RCLS-CF). METHODS: We conducted a two-phase qualitative study with stakeholders involved in designing, implementing, and using the RCLS-CF. First, we conducted semi-structured interviews with 19 program personnels involved in design and delivery of the program. We then undertook 11 follow-up interviews. Analysis of interviews was based on the constant comparative method, supported by NVivo software. RESULTS: The organizing principle for the RCLS-CF was a shift to more partnership-based relationships between patients and clinicians, founded in values of co-production, and facilitated by technology-enabled data sharing. Participants proposed that, for the system to be successful, the data it collects must be both clinically useful and meaningful to patients and clinicians. They suggested that the prerequisites included a technological infrastructure capable of supporting data entry and joint decision-making in an accessible way, and a set of social conditions, including willingness from patients and clinicians alike to work together in new ways that build on the expertise of both parties. Follow-up interviews highlighted some of the obstacles, including technical challenges and practical constraints on refiguring relationships between clinicians and patients. CONCLUSIONS: The values and vision underlying the RCLS-CF were shared and clearly and consistently articulated by design stakeholders. The challenges to realization were often not at the level of principle, but were both practical and social in character. Lessons from this study may be useful to other systems looking to harness the power of "big data" registries, including patient-reported data, for care, research, and quality improvement.



Co-production, Cystic fibrosis, Learning health systems, Program theory, Qualitative, Quality improvement, Registries, Replication, Cystic Fibrosis, Decision Making, Shared, Humans, Information Technology, Interviews as Topic, Learning Health System, Patient Participation, Qualitative Research, Quality Improvement, Social Environment, Stakeholder Participation, United States

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Implement Sci

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Springer Science and Business Media LLC


All rights reserved
Wellcome Trust (097899/Z/11/Z)
Health Foundation (unknown)
This study was funded by Mary Dixon-Woods’ Wellcome Trust Investigator award WT097899 and by the Health Foundation’s grant to the University of Cambridge for The Healthcare Improvement Studies (THIS) Institute.