Development of a MS Registry to Bridge the Gap Between EHR Functionality and Clinical Information Needs: A Next Generation MS Documentation System

Background:   The prior authorization process can delay the initiation of disease modifying therapy (DMT) in the MS population.  As a result patients are at risk for continued disease activity.  In May 2015, the INI MS Clinic created a registry to consolidate specialty information, thereby integrating EHR functionality and clinical information needs. 

Objectives:   The primary objective was to show the registry could speed access to DMTs. Secondary objectives included decreased relapse rates, decreased MS hospitalizations, increased staff satisfaction and increased investigator initiated studies. 

Methods:  A retrospective review was performed 1 year prior and 1 year post registry implementation.  Investigator initiated studies 5 years prior and 2 years post was tracked. Times to data extraction and medication approval were examined by multivariable generalized linear regression models controlling for age, gender, race and Charlson comorbidity index. A McNemar’s test was used to compare the relapse rate and the hospitalization rate between pre- and post-implementation. A paired t-test was employed to compare the staff time for retrieving information from the EHR to that from the registry.

Results:   A total of 1210 patients were included. The mean of age was 50.9 years with a standard deviation (SD) of 12.9 years. The majority were female (74%) and white American (93%). The reduction of time from prescription to data extraction was not significant (9.4 vs. 8.5 days, p=0.587). The time from data extraction to medication approval was similar between pre- and post-implementation (4.3 days vs. 4.2 days, p=0.787). The relapse rate was 12.3% and 11.0% in 1 year pre- and post-implementation, respectively (p=0.302). However, the staff time for retrieving information from the EHR was significantly longer than that from the patient registry (3.3 vs. 1.1 minutes, p<0.001). Furthermore, the hospitalization rate was significantly reduced after patient registry implementation (1.4% vs. 0.4%, p=0.012). Four investigator initiated projects 2 years post were reported and 3 were reported in 5 years prior.

Conclusions:   The 1-year implementation of the MS patient registry has shown a significant decrease of hospitalizations and saved notable staff time for retrieving patient information. However, the short-term effect might not lead to a significant reduction of the time to DMT and relapse rates.