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CPRN’s Path to a Learning Health System

Dr. Garey Noritz, one of the Cerebral Palsy Research Network’s (CPRN) Co-founder’s, co-authored an article published in Developmental Medicine and Children Neurology about his participation in a “Learning Health System” for cerebral palsy. Entitled “’Learn From Every Patient’: implementation and early results of a Learning Health System1,” describes the convergence of three major trends in medicine: electronic health/medical records (EHR/EMR), the prioritization of translational research and the need to better control health care costs.

These trends came together in a project pioneered at Nationwide Children’s Hospital (NCH) for its population with cerebral palsy. “Learn from Every Patient” (LFEP) is a single-center registry effort that sought to capture the patient information from CP clinic visits to conduct research while improving the quality of care. The CP provider team at NCH defined a set of data points that were common in each visit from a CP patient, e.g., diagnosis, type of CP, treatments, etc. These data points, historically included in the text of the doctor’s note, were represented on screens in the hospital EMR and were used during patient clinic visits.

By collecting the patient information in a structured format in the EMR rather than text in the doctor’s note, the authors were able to analyze trends in the data over a 12-month period and compare patient health outcomes among various groups that either participated in the project or were seen in another clinic.

Clinicians using the system found they were equally or more efficient than their prior method for patient care. NCH was able to increase its CP clinic volume by 20% with the same number of providers over the 12-month period studied. The study included a group of 131 patients with cerebral palsy. The impact on the health of these children was significant:

“Children treated in the LFEP Program for a 12-month period experienced a 43% reduction in total inpatient days (p=0.030 vs prior 12mo period), a 27% reduction in inpatient admissions, a 30% reduction in emergency department visits (p=0.001), and a 29% reduction in urgent care visits (p=0.046). “

In the month following the publication of this article, Dr. Rich Stevenson, a CPRN member, wrote a commentary that was published in the journal entitled “Integration of research and clinical practice: the future is now2” where he not only extolled the virtues of LFEP but also its extension in implementation in CPRN. He concluded his commentary by saying:

“Through their foundational work, the ‘Learn from Every Patient’ Study Group has in fact built a template for the data collection in both efforts. They have successfully created what others throughout the field of medicine have been calling for, and in so doing have fast-forwarded the integration of research and clinical practice for children with CP and other childhood disabilities. The future is now.”

CPRN is helping NCH to facilitate innovation in patient care. This study highlights that research can help children with CP through innovation in care.

1Lowes, L. P., Noritz, G. H., Newmeyer, A., Embi, P. J., Yin, H., Smoyer, W. E., ‘Learn from Every Patient’ Study Group (2016), ‘Learn From Every Patient’: implementation and early results of a learning health system. Developmental Medicine & Child Neurology. doi: 10.1111/dmcn.13227
2Stevenson, R. D. (2016), Integration of research and clinical practice: the future is now. Dev Med Child Neurol. doi:10.1111/dmcn.13281