Pink and white publication of ‘Research CP -- Setting a Patient-Centered Research Agenda for Cerebral Palsy’

The cerebral palsy research network: Building a learning health network for cerebral palsy
Journal of Pediatric Rehabilitation Medicine, Bailes, Amy F., Kean, Jacob, Gross, Paul H., Narayanan, Unni, Noritz, Garey, Hurvitz, Ed, Leonard, Jeffrey, Shusterman, Michele, Gannotti, Mary
June 25, 2021

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.

Complete paper as submitted can be downloaded here.

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