ArticleLearning health systems2021
Sustainable generation of patient-led resources in a learning health system.
Article in Learning health systems, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
12 citing papers in PubMed, 15 citations in OpenAlex.
- The Development and Co-Production of a Caregiver Coping Resource for Pediatric Inflammatory Bowel Disease and Autoimmune Liver Disease.Learning health systems · 2026Article
- Improvement science as the engine for the next generation of learning health networks.Frontiers in health services · 2026Article
- Patient Roles and Patient Knowledge in Learning Health Systems.The International journal of health planning and management · 2026Article
- Transforming the future of health: building learning health systems across the globe.Health affairs scholar · 2025Article
- The role of patients, caregivers, and communities in Learning Health Systems: a narrative review.Frontiers in health services · 2025Review
- Patient Advisory Groups in Inflammatory Bowel Disease: A Collaborative Relationship Between Patients and Researchers.Crohn's & colitis 360 · 2025Article
- Interventions to improve system-level coproduction in the Cystic Fibrosis Learning Network.BMJ open quality · 2024Article
- Conceptualizing and redefining successful patient engagement in patient advisory councils in learning health networks.Learning health systems · 2024Article
- What Are the Best Practices for Co-Creating Patient-Facing Educational Materials? A Scoping Review of the Literature.Healthcare (Basel, Switzerland) · 2023Article
- A science of collaborative learning health systems.Learning health systems · 2021Article
- Getting what is needed, when it's needed: Sharing information, knowledge, and know-how in a Collaborative Learning Health System.Learning health systems · 2021Article
- Sustainable generation of patient-led resources in a learning health system.Learning health systems · 2021Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
11 authors at 8 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundPatient and Family Advisory Councils (PFACs) are an emerging mechanism to integrate patient and family voices into healthcare. One such PFAC is the Patient Advisory Council (PAC) of the ImproveCareNow (ICN) network, a learning health system dedicated to advancing the care of individuals with pediatric inflammatory bowel disease (IBD). Using quality improvement techniques and co-production, the PAC has made great strides in developing novel patient-led resources.
methodsThis paper, written by patients and providers from ICN, reviews current ICN data on PAC-generated resources, including creation processes and download statistics.
resultsLooking at different iterations of PAC infrastructure, this paper highlights specific leadership approaches used to increase patient involvement and improve resource creation. Emerging data suggests that the larger ICN learning health system has had limited interactions with these resources.
conclusionICN provides a novel approach for meaningful integration of patient partners into learning health systems. This paper points to the incredible value of PFAC expertise in the resource creation process. Future work should seek to support PFAC development across other diseases and address the challenges of integrating patient-led resources into clinical care.
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What OpenQuestion holds
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.