Sustainable generation of patient-led resources in a learning health system.
QI
learning health system
patient advisory council
patient engagement
patient resources
Journal
Learning health systems
ISSN: 2379-6146
Titre abrégé: Learn Health Syst
Pays: United States
ID NLM: 101708071
Informations de publication
Date de publication:
Jul 2021
Jul 2021
Historique:
received:
30
10
2020
revised:
20
01
2021
accepted:
25
01
2021
entrez:
19
7
2021
pubmed:
20
7
2021
medline:
20
7
2021
Statut:
epublish
Résumé
Patient 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. This paper, written by patients and providers from ICN, reviews current ICN data on PAC-generated resources, including creation processes and download statistics. Looking 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. ICN 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.
Sections du résumé
BACKGROUND
BACKGROUND
Patient 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.
METHODS
METHODS
This paper, written by patients and providers from ICN, reviews current ICN data on PAC-generated resources, including creation processes and download statistics.
RESULTS
RESULTS
Looking 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.
CONCLUSION
CONCLUSIONS
ICN 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.
Identifiants
pubmed: 34277938
doi: 10.1002/lrh2.10260
pii: LRH210260
pmc: PMC8278445
doi:
Types de publication
Journal Article
Langues
eng
Pagination
e10260Informations de copyright
© 2021 The Authors. Learning Health Systems published by Wiley Periodicals LLC on behalf of the University of Michigan.
Déclaration de conflit d'intérêts
The authors have no conflicts of interests to disclose.
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