ArticleImplementation science : IS2020
A qualitative study of design stakeholders' views of developing and implementing a registry-based learning health system.
Article in Implementation science : IS, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 20 papers, 1 of them a synthesis that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
20 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Implementation strategies and outcome measures for advancing learning health systems: a mixed methods systematic review.Health research policy and systems · 2023Pooled it
- A Framework and Method for Measuring the Implementation of Data Science in Critical Care.Critical care explorations · 2026Article
- Artificial Intelligence for Cardiovascular Care in Action: From Learning to Implementation in Health Systems.JACC. Advances · 2025Review
- Implementing a rapid-learning health system in early intervention services for psychosis: qualitative evaluation of its feasibility and acceptability.Health research policy and systems · 2025Article
- Towards a shared understanding of the learning health system in a large academic-based health system: A qualitative analysis.Health services management research · 2025Article
- The role of patients, caregivers, and communities in Learning Health Systems: a narrative review.Frontiers in health services · 2025Review
- Implementation of a Co-Design Strategy to Develop a Dashboard to Support Shared Decision Making in Advanced Cancer and Chronic Kidney Disease.Journal of clinical medicine · 2024Article
- Establishing a Cystic Fibrosis Learning Network: Interventions to promote collaboration and data-driven improvement at scale.Learning health systems · 2023Article
- The journey to a learning health system in primary care: a qualitative case study utilising an embedded research approach.BMC primary care · 2023Article
- Mobilizing registry data for quality improvement: A convergent mixed-methods analysis and application to spinal cord injury.Frontiers in rehabilitation sciences · 2023Article
- Pathway map development for medical device event reporting in operating theatres: a human factors approach to improving the existing system.BMJ surgery, interventions, & health technologies · 2023Article
- Prioritizing Measures That Matter Within a Person-Centered Oncology Learning Health System.JNCI cancer spectrum · 2022Article
- The Science of Learning Health Systems: Scoping Review of Empirical Research.JMIR medical informatics · 2022Article
- Big Data Health Care Innovations: Performance Dashboarding as a Process of Collective Sensemaking.Journal of medical Internet research · 2022Article
- Using a learning health system framework to examine COVID-19 pandemic planning and response at a Canadian Health Centre.PloS one · 2022Article
- The role of co-production in Learning Health Systems.International journal for quality in health care : journal of the International Society for Quality in Health Care · 2021Review
- Using qualitative and participatory methods to refine implementation strategies: universal family psychosocial screening in pediatric cancer.Implementation science communications · 2021Article
- A Mobile Health Platform for Self-Management of Pediatric Cystic Fibrosis: Qualitative Study of Adaptation to Stakeholder Needs and Integration in Clinical Settings.JMIR formative research · 2021Article
- Evaluating stakeholder involvement in building a decision support tool for NHS health checks: co-producing the WorkHORSE study.BMC medical informatics and decision making · 2020Article
- Sustained Reduction in Time to Data Entry in the Cystic Fibrosis Foundation Registry.Pediatric quality & safetyArticle
Corrections and comments
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Authors and funding
10 authors.
Funding
Abstract
backgroundNew 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).
methodsWe 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.
resultsThe 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.
conclusionsThe 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.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.