Development of an Integrated Multiple Sclerosis Flowsheet Registry to Bridge the Gap between Electronic Health Record Functionality and Clinical Information Needs ws

Research Article

Austin J Mult Scler & Neuroimmunol. 2015; 2(4): 1023.

Development of an Integrated Multiple Sclerosis Flowsheet Registry to Bridge the Gap between Electronic Health Record Functionality and Clinical Information Needs

Cooley KL1*, Paris BL2,3, Asche CV2,3,4 and Valenzuela R2,5

1Illinois Neurological Institute, OSF Saint Francis Medical Center, USA

2Department of Medicine, University of Illinois College of Medicine Peoria, USA

3Center for Outcomes Research, University of Illinois College of Medicine Peoria, USA

4Department of Pharmacy Systems, University of Illinois at Chicago College of Pharmacy, USA

5Neuro-ophthalmology Moran Eye center, University of Utah School of Medicine, USA

*Corresponding author: Cooley KL, Illinois Neurological Institute, OSF Saint Francis Medical Center, 530 NE Glen Oak Avenue, Peoria, IL 61637, USA

Received: November 12, 2015; Accepted: December 25, 2015; Published: December 27, 2015


We describe development of the Integrated Multiple Sclerosis (MS) Flowsheet Registry to provide a longitudinal, complete clinical picture of the MS patient for clinical care decision making, insurance authorizations, and research at the INI MS Center in downstate Illinois. The MS Flowsheet concept was envisioned in 2009 and has transformed from a paper version to an MS specific registry capable of interacting with their EHR. A decision was made to develop a research protocol to study the cost benefit of integrating the MS Flowsheet Registry into practice as a collaboration between OSF Saint Francis Medical Center, INI MS Center, and UICOM-P. The MS Flowsheet Registry described was implemented as part of this research project. Advantages to implementing the registry include: providing a one cohesive mechanism for the provider and staff to view each MS patient’s individual MS profile, streamlining the prior authorization process for DMT approval thereby expediting DMT access to decrease relapse rates and progression, and increasing research opportunities at the local level. The primary disadvantage of the registry is that it is a work around solution and only a temporary fix as improved EHR capabilities are considered for future purchase. We expect that the MS Flowsheet Registry will result in improved patient care and cost savings and additional studies are needed to evaluate the cost benefit.

Keywords: Registries; Database Management Systems; Electronic Health Records; Decision Support Systems; Multiple Sclerosis


9HPT: 9 Hole Peg Test; DMT: Disease Modifying Therapy; EHR: Electronic Health Record; EDW: Enterprise Data Warehouse; EDSS: Expanded Disability Status Scale; INI: Illinois Neurological Institute; IDEA: Instant Data Entry Application; MOA: Medical Office Assistant; MS: Multiple Sclerosis; PPMS: Primary Progressive Multiple Sclerosis ; PRO: Patient Reported Outcomes; RRMS: Relapsing Remitting Multiple Sclerosis; SPMS: Secondary Progressive Multiple Sclerosis; T25FW: Timed 25 Foot Walk; US: United States; UICOM-P: University of Illinois College of Medicine Peoria


This paper describes the development of the Integrated Multiple Sclerosis (MS) Flowsheet Registry at the Illinois Neurological Institute (INI) Multiple Sclerosis Center. The promise of information technology solutions to improve health care is seldom realized [1], and the gap between health information system design and reality persists [2]. This was the case at the INI MS Center after system-wide implementation of a commercially available electronic health record (EHR).

An estimated 400,000 people in the United States (US) are diagnosed with MS [3], with incidence rate affected by sunlight exposure, gender, age, and ethnicity [4]. Initial symptoms appear between the ages of 20 and 40 years, impacting productivity, employment, and quality of life [5]. MS is included in the World Health Organization top 100 diseases affecting quality of life [5], and we spend 445 million USD on direct MS care annually [6]. However, annual indirect costs exceed 10 billion USD [4,7]. The clinical course of MS often differs among individuals and symptoms can vary [8,9]. Tracking long-term patient outcomes in the real-world clinical setting could help physicians and researchers understand this disease better.

In fact, the EDMUS European MS registry has been in use for more than 20 years [10,11], and standalone databases to support the care of MS patients is not new [12-14]. However, during the push to adopt EHRs, many specialty databases fell by the wayside. Much of the data about the course of MS progression is present in the EHR narrative progress notes or “buried” within visit encounters only. The Veterans Health Administration has had success with extracting data on MS from its EHR to support patient care [15], and natural language processing algorithms show promise with extracting MS data from commercially available EHRs [16,17]. However, not every organization has the same capabilities for automated data extraction, and manual chart review is time-consuming.

OSF Saint Francis Medical Center, INI and the Center for Outcomes Research at University of Illinois College of Medicine at Peoria collaborated on development of the MS Flowsheet Registry, which has the potential to provide outcome data in reportable format, support future research projects, and contribute healthcare cost savings. In addition, the insurance authorization process for disease modifying therapy can be iterative and lengthy, resulting in rework for nursing staff and delays in treatment for patients. Perhaps more importantly, the MS Flowsheet Registry will provide a full picture about each patient’s individual MS course. This information can facilitate discussion and understanding between the patients and care providers.

Materials and Methods

Each year, over 600 MS patients are treated at INI MS Center, the only MS Center located in downstate Illinois. In late 2009, a research coordinator (KC) envisioned an MS Flowsheet Registry to support patient care and research. At that time, the clinic was using paper based charting. The research coordinator worked with the providers, nursing staff, and manager to determine what information needed to be captured on a one-page sheet. A paper flowsheet was created and filed in the hard chart behind its own tab labeled: MS Flowsheet.

In 2010, implementation of an EHR in 2011 was announced, and it was hoped that the MS Flowsheet data could be captured within this new EHR. The new EHR, EPIC, went into production at the clinic in August 2011. Although the EHR has greatly improved dissemination of healthcare data among disciplines, the MS Clinic saw a gap in regards to data extraction for outcome reporting with the MS population. In the EHR, specific MS information was documented in narrative format only; this information included: type of MS, date of diagnosis, onset of MS symptoms, MS medication history with reason for discontinuation, relapse information, motor assessments including: Expanded Disability Status Scale (EDSS), Timed 25 Foot Walk (T25FW), 9 Hole Peg Test (9HPT), cognitive assessments and any patient reported outcome (PRO) questionnaires. In addition, any imaging or lab tests performed outside of the institution could not be extracted electronically since those paper reports were scanned into the EHR.

Over time it became cumbersome to search through multiple encounters to review the MS patient’s individual clinical course. For example, there was nowhere to see how the T25FW progressed over time for a given patient. Disease modifying treatment (DMT) review was also difficult. The medication start date documented in the EHR was actually the date of the last time the medication was ordered by the provider, not the date the patient actually initiated the medication. Other key information such as date of MS diagnosis, date of first onset of MS symptoms, start and stop dates of previous DMT prescriptions, and reason for DMT discontinuation was not in an easily extractable format. Manual chart review was needed to complete insurance authorizations and to support MS clinical trials. MS data needed to be reportable whenever an outcome was queried. Purchasing additional software was not an immediate option, so an alternative was investigated.

In 2012, the research coordinator, clinic manager, nursing staff, and providers from the MS Clinic began to work with outcomes researchers at a local college of medicine to collaborate and address these issues. The concept of an integrated MS Flowsheet Registry was developed, combining data elements from the EHR database and a new MS Registry based off of the paper flowsheet. Affiliated with OSF Healthcare System, this clinic predicted the benefits to patient care, staff satisfaction, research and cost savings if an MS Registry was integrated within the EHR. Please refer to Figure 1 for the data elements and vision of the team.