We describe quality improvement and practice-based research using the electronic medical record (EMR) in a community health system–based department of neurology. Our care transformation initiative targets 10 neurologic disorders (brain tumors, epilepsy, migraine, memory disorders, mild traumatic brain injury, multiple sclerosis, neuropathy, Parkinson disease, restless legs syndrome, and stroke) and brain health (risk assessments and interventions to prevent Alzheimer disease and related disorders in targeted populations). Our informatics methods include building and implementing structured clinical documentation support tools in the EMR; electronic data capture; enrollment, data quality, and descriptive reports; quality improvement projects; clinical decision support tools; subgroup-based adaptive assignments and pragmatic trials; and DNA biobanking. We are sharing EMR tools and deidentified data with other departments toward the creation of a Neurology Practice-Based Research Network. We discuss practical points to assist other clinical practices to make quality improvements and practice-based research in neurology using the EMR a reality.

SummaryObjectiveUsing the electronic medical record (EMR) to capture structured clinical data at the point of care would be a practical way to support quality improvement and practice‐based research in epilepsy.MethodsWe describe our stepwise process for building structured clinical documentation support tools in the EMR that define best practices in epilepsy, and we describe how we incorporated these toolkits into our clinical workflow.ResultsThese tools write notes and capture hundreds of fields of data including several score tests: Generalized Anxiety Disorder‐7 items, Neurological Disorders Depression Inventory for Epilepsy, Epworth Sleepiness Scale, Quality of Life in Epilepsy–10 items, Montreal Cognitive Assessment/Short Test of Mental Status, and Medical Research Council Prognostic Index. The tools summarize brain imaging, blood laboratory, and electroencephalography results, and document neuromodulation treatments. The tools provide Best Practices Advisories and other clinical decision support when appropriate. The tools prompt enrollment in a DNA biobanking study. We have thus far enrolled 231 patients for initial visits and are starting our first annual follow‐up visits and provide a brief description of our cohort.SignificanceWe are sharing these EMR tools and captured data with other epilepsy clinics as part of a Neurology Practice Based Research Network, and are using the tools to conduct pragmatic trials using subgroup‐based adaptive designs.

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Background Congenital CMV (cCMV) causes up to 15% sensorineural hearing loss (SNHL) in the UK, however hearing outcomes may improve with ganciclovir treatment commencing in the first month of life. Targeted screening of infants who are ‘referred’ for further audiological testing after ‘no clear responses’ are found on their newborn hearing screen for CMV might identify these babies early enough to offer treatment. Aims We present initial feasibility and acceptability data of targeted cCMV screening. Methods Eligible infants from Northumbria and South-West London, (those' referred' for further hearing testing after their newborn hearing screening and <22 days old) had cCMV screening by PCR on urine and salivary samples. Infants screening positive had confirmatory CMV testing. Feasibility was measured by the number of infants correctly identified with cCMV and assessed for treatment by 28 days; acceptability was measured by parental anxiety (Spielberger STAI anxiety score). Results Of 14,373 newborns 351 were' referred' for further hearing testing after their initial hearing screening and 248 families were approached with 152 (62%) agreeing to cCMV screening. Three newborns were found positive, all detected in time to allow assessment for treatment within 28 days. Salivary samples were easier to acquire with 95% (145) returning salivary samples and 41% (63) urine samples. Anxiety scores in study mothers were not significantly different to reference mothers. Conclusions Targeted cCMV screening using saliva is feasible and acceptable to parents. Extending the National screening programme to include cCMV testing in all infants without clear early hearing responses may improve hearing outcomes. Economic analysis and mechanistic processes require further evaluation.

Background: Alzheimer’s disease and aging brain disorders are progressive, often fatal neurodegenerative diseases. Successful aging, modern lifestyles and behaviors have combined to result in an expected epidemic. Risks for these diseases include genetic, medical, and lifestyle factors; over 20 modifiable risks have been reported. Objectives: We aim to primarily prevent Alzheimer’s disease and related disorders through electronic medical record (EMR)-based screening, risk assessments, interventions, and surveillance. Design: We identified modifiable risks; developed human, systems and infrastructural resources; developed interventions; and targeted at-risk groups for the intervention. Setting: A Community Based Health System. Participants: In year one (June 2015 to May 2016), 133 at-risk patients received brain health services with the goal of delaying or preventing Alzheimer’s disease and related disorders. Measurements: We created mechanisms to identify patients at high risk of neurodegenerative disease; EMR-based structured clinical documentation support tools to evaluate risk factors and history; evidence-based interventions to modify risk; and the capacity for annual surveillance, pragmatic trials, and practice-based and genomic research using the EMR. Results: This paper describes our Center for Brain Health, our EMR tools, and our first year of healthy but at-risk patients. Conclusion: We are translating research into primary prevention of Alzheimer’s disease and related disorders in our health system and aim to shift the paradigm in Neurology from brain disease to brain health.