Multiple Sclerosis Surveillance Registry: Woman-Owned Geek Sources, Inc. Uses Big Data and Health Informatics to Heal and Cure MS
April 20th, 2017 - by Geek Sources, Inc. | Share on:
All of us at Geek Sources, a Women-Owned Small Business (WOSB) specializing in information technology (IT), were honored to be selected to support the researchers and medical practitioners at the Department of Veteran Affairs (VA) dedicated to solving the puzzle of Multiple Sclerosis (MS). We were awarded a project with the VA and the Veterans Health Administration (VHA) to enhance the Multiple Sclerosis Surveillance Registry (MSSR) system to add critical new data elements for significant analytics. With a longstanding, successful history with the VA, we have also worked on the Veterans Benefits Management System (VBMS)-Ratings, VBMS-Awards, Eliminating Veteran Homelessness (EVH) system, Loan Guarantee (LGY) system, Memorial Enterprise Letters (MEL) system, and Research Administrative Management System (RAMS). In addition, our team of health IT (HIT) experts bring a wealth of VA health registry experience, including, but not limited to, the Traumatic Brain Injury (TBI) registry, the Embedded Fragments Registry (EFR), the Breast Care Registry (BCR), the Oncology (ONC) registry, the VA Eye Injury Data Store (EIDS), and the Clinical Case Registry (CCR). The enhancements we made to the MSSR are a prime example of our Geek expertise in big data and health informatics.
MSSR is a web-based registry application that provides clinical data surveillance tracking and longitudinal patient data analysis and reporting for the entire MS population within the VHA. In response to Congressional legislation, the system tracks and monitors the VA's MS patient cohort, demographics, diagnoses, symptoms, and treatments over a span of time and geography. MSSR provides extensive health data analytics for the Multiple Sclerosis Centers of Excellence (MSCoE) directors, in addition to providing them with the MS Assessment Tool (MSAT) to assist MS specialists with the difficulty of diagnosis. The MSCoE in the East and West have endeavored to actively study and examine MS, publishing and sharing their findings for healthcare academia and other communities. One article in the Journal of Rehabilitation Research & Development reveals that one of the problems that MS patients and physicians have encountered over the years is that "there is no gold standard MS cohort/registry in the United States nor has there been a comparison of the MS databases that do exist." What this means is that in order "to further our understanding of risk factors for the development and progression of MS as well as to conduct comparative effectiveness studies, we need a large, longitudinal, and diverse cohort of MS patients."
The VA's MSSR system meets those needs. With over 30,000 Veterans who suffer from MS, 1500 new MS cases annually, and 125 new cases every month, MSSR provides a vast demographic that ranges in age and location, and "findings suggest that MSSR is generally representative of the larger MS population in the United States. The detailed healthcare utilization and cost data maintained by the VHA combined with data from MSSR provides a unique and demographically diverse MS cohort for future study."
For our part, Geek Sources was tasked with extending the MSSR with additional data from various data sources. This data included inpatient/outpatient utilization, prosthetics, vital signs, vital statuses, death dates and causes, non-VA/fee-based medications, and Decision Support System (DSS) data - specifically, laboratory, radiographics, pharmacy, and costs. Considering the VA operates "the largest integrated health care system in the United States" (per the VA's website), this was no easy feat. Currently, the VHA includes "168 VA Medical Centers and 1,053 outpatient sites...serving more than 8.9 million Veterans each year." To persist the Veteran's heath record, the VA leverages the Veterans Information Systems and Technology Architecture (VistA), implemented in MUMPS, as its Electronic Health Record (EHR). To complicate matters in terms of big data, VistA has more than 130 installations deployed at different VA facilities across the nation. Hence, if a Veteran visits multiple facilities, it is possible that different portions of his/her health record exists in multiple instances of VistA. The VA's Corporate Data Warehouse (CDW), an Oracle database (DB), contains exports from all the VistA instances. Consequently, these original data sources feeding the CDW are primarily decentralized and customized instances of VistA, which provide a disparate, non-centralized source of clinical MS data that makes reporting and analytics difficult. The CDW addresses some of these issues but has data quality issues and holes with respect to MS.
Geek Sources began the MSSR enhancements project by reviewing and confirming existing requirements, development artifacts, and testing artifacts, including user stories and acceptance criteria. We then held Joint Application Development (JAD) sessions with Subject Matter Experts (SMEs) and data source SMEs to verify the current data workflows from a business process perspective by performing the initial analysis of the state of the data sources targeted for the enhancements. The SMEs included clinicians, statisticians, and epidemiologists to review existing data models and schema within the CDW to identify potential tables and fields as sources for the data enhancements.
We also analyzed existing interfaces to CDW, its Extract Transform and Load (ETL) code, the availability of data, the expected accuracy of the data, and the timing of data transfers and their frequency. Once the fields were confirmed, we reviewed sample data from CDW to determine the quality of the data prior to targeting the information for export. We then enhanced and developed ETLs in C#/SQL within Visual Studio to export and import the data using SQL Server Information Services (SSIS) into MSSR's Microsoft (MS) SQL Server DB from CDW. In addition, we enhanced MSAT within Computerized Patient Record Systems (CPRS), the User Interface (UI) of VistA. This included enhancing the messaging to VistA. MSAT sends a Text Integration Utility (TIU) note with health factors through a VistA Integration Adapter (VIA) message, routed through the VistA Integration Engine (VIE), using HL7 messaging to VistA.
Geek Sources also developed new analytic reports using chart controls within .NET framework for the enhancements leveraged by the researchers. To ensure a quality system, we enhanced and developed master test plans, test cases, and scripts to verify the delivered user stories, epics, and traced requirements - all maintained within the Requirements Traceability Matrix (RTM). Geek Sources maintained requirements as well as code versioning and configuration management within the IBM Rational Jazz Toolset Rational Team Concert (RTC), Rational Requirements Composer (RRC), and Rational Quality Manager (RQM). Our enhancements were tested and passed for cyber security leveraging HP Fortify Secure, as well as ADA 508 compliance using Deque WorldSpace and FireEyes. We successfully executed the project, adhering to the Project Management Body of Knowledge (PMBOK) and quality standards, including the VA's Project Management Accountability System (PMAS) using MS Projects and Primavera tools.
Our MSSR Enhancements Project Manager, Cathryn Patterson, explains some of the hurdles overcome during the project: "The enhancement of MSSR was a flagship project for big data management at the VA. No one before us had been granted more access to the different health data sets as requested by the Business Owner. CDW-Raw is where data from multiple Veterans Integrated Service Networks (VISNs) are first loaded from across the nation before being mined, cleaned, and loaded into CDW-Prod. This is where a lot of the DSS data resides. We had to analyze huge datasets and normalize them to display the new data in a meaningful way. Our data architect and ETL developer did all of this while working with the VA doctors and researchers. I have never been prouder of our Geeks - we overcame so many obstacles to enhance this powerful healthcare system that helps provide quality care of our Veterans suffering from MS."
For the first time ever, MS clinicians now have more meaningful data, which allows for more accurate diagnoses, treatments, and epidemiological studies. In so doing, the lives of all MS-afflicted Veterans have been made a little bit easier in the process, and Geek Sources has successfully contributed to advancing MS research - bringing us a step closer to finding a cure. Sheetal Nilak, our data architect on the project, reveals that "the customers were happy with the data that we pulled for them from CDW. This [data] will help them make better/faster decisions, evaluate treatment plans, and, thus, help Veterans." By collecting, organizing, and delivering data from multiple sources in a single registry, the MSSR makes it possible for the VHA and its employees to use this data to better diagnose and treat those Veterans that have been affected by MS, hopefully making their lives a little easier in the process.
According to the National Multiple Sclerosis Society, MS is "an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body." Part of the difficulty with diagnosing and treating MS is that its symptoms vary from fatigue and bladder problems, to dizziness and difficulty walking, to more psychological issues, like depression and lower cognitive functioning. Unlike other diseases, MS is incredibly difficult to diagnose, with it being mistaken for Clinically Isolated Syndrome (CIS) or Neuromyelitis Optica, also known as Devic's Disease, and vice versa. Unfortunately, this means that the patient must often take various drugs, try different rehabilitation programs, and see multiple specialists - relaying their history with the disease each time they encounter a new doctor or hospital. For anyone, let alone our Veterans, MS is a debilitating disease that makes everyday life activities, that we all take for granted, massively challenging, with sufferers taking various disease modification treatments (DMTs) within different rehabilitation programs under the care of several MS specialists.
With little private sector funding, Americans suffering from MS rely on the data integrity and longitudinal analysis of the VA's MSSR system. Although the MSSR focuses on our Veteran population, the information it gathers and the data it creates on MS helps all Americans affected by the disease. With our work on the Multiple Sclerosis Surveillance Registry, Geek Sources has been a pivotal force behind the furthering of MS research and, with our team of dedicated IT professionals, we continue to serve America's Veterans by helping provide quality IT healthcare systems.