The cerebral palsy research network: Building a learning health network for cerebral palsy

被引：6

作者：

Bailes, Amy F. ^{[1
]}

Kean, Jacob ^{[2
]}

Gross, Paul H. ^{[2
]}

Narayanan, Unni ^{[3
]}

Noritz, Garey ^{[4
]}

Hurvitz, Ed ^{[5
]}

Leonard, Jeffrey ^{[4
]}

Shusterman, Michele ^{[6
]}

Gannotti, Mary ^{[7
]}

机构：

[1] Cincinnati Childrens Hosp Med Ctr, Cincinnati, OH 45229 USA

[2] Univ Utah, Salt Lake City, UT USA

[3] Univ Toronto, Hosp Sick Children, Toronto, ON, Canada

[4] Ohio State Univ, Nationwide Childrens Hosp, Columbus, OH 43210 USA

[5] Univ Michigan, Ann Arbor, MI 48109 USA

[6] CP Daily Living, Greenville, SC USA

[7] Univ Hartford, Hartford, CT USA

来源：

JOURNAL OF PEDIATRIC REHABILITATION MEDICINE | 2021年 / 14卷 / 02期

关键词：

Cerebral palsy; learning health network; quality improvement; DISABILITIES MONITORING NETWORK; CLASSIFICATION-SYSTEM; PREVALENCE; IMPROVEMENT; REGISTRY; AUTISM;

D O I：

10.3233/PRM-210011

中图分类号：

R72 [儿科学];

学科分类号：

100202 ;

摘要：

PURPOSE: The purpose of this study was to measure the growth of the Cerebral Palsy (CP) Research Network towards becoming a Learning Health Network in order to guide future development. METHODS: Thirteen CP Research Network leaders completed the Network Maturity Grid (NMG) which consists of six domains with eight to 10 components each. The six domains are Systems of Leadership, Governance and Management, Quality Improvement, Engagement and Community, Data and Analytics, and Research. Radar mapping was utilized to display mean scores on a 5-point ordinal scale (1 = not started to 5 = idealized state) across domains and for individual components within domains. Consensus was reached for top priorities for the next 3-5 years. RESULTS: Domain scores ranged from 2.4 in Quality Improvement to 3.2 in System of Leadership. The lowest scoring component was clinician clinical decision support and the highest was common purpose. The following priority areas of focus were agreed upon moving forward: development of leaders, financial sustainability, quality improvement education and training, patient reported data, data quality and validation, and primary data collection. CONCLUSION: Results from this project will be utilized for strategic planning to improve the network. Conducting regular self-assessments of the network with the NMG will be useful in achieving the network's ultimate goal to improve care and outcomes for individuals with CP.

引用

页码：161 / 171

页数：11

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