Engineering an EMR System in the Developing World Necessity is the Mother of Invention by Gerald Paul Douglas B.S. Computer Science, University of Victoria, 1995 M.S. Information Science, University of Pittsburgh, 1999 Submitted to the Graduate Faculty of School of Medicine in partial fulfillment of the requirements for the degree of Doctor of Philosophy University of Pittsburgh 2009 UNIVERSITY OF PITTSBURGH SCHOOL OF MEDICINE This dissertation was presented by Gerald Paul Douglas It was defended on March 20th, 2009 and approved by Roger S. Day, ScD, Associate Professor of Biomedical Informatics, Associate Professor of Biostatistics (secondary), University of Pittsburgh Wendy W. Chapman, PhD, Assistant Professor of Biomedical Informatics, Assistant Professor of Intelligent Systems (secondary), University of Pittsburgh Hamish S.F. Fraser, Hamish SF Fraser, MBChB, MSC, MRCP, Assistant Professor, Division of Social Medicine & Health Inequalities, Harvard Medical School Dissertation Advisor: Dr. Cynthia S. Gadd, Adjunct Assistant Professor of Biomedical Informatics, University of Pittsburgh ii Copyright © by Gerald P Douglas 2009 iii Engineering an EMR System in the Developing World Necessity is the Mother of Invention Gerald Paul Douglas, M.S. University of Pittsburgh, 2009 While Electronic Medical Record (EMR) systems continue to improve the efficacy of healthcare delivery in the West, they have yet to be widely deployed in the developing world, where more than 90% of the global disease burden exists. The benefits afforded by an EMR notwithstanding, there is some skepticism regarding the feasibility of operationalizing an EMR system in a low-resource setting. This dissertation challenges these preconceptions and advances the understanding of the problems faced when implementing EMR systems to support healthcare delivery in a developing-world setting. Our methodology relies primarily on eight years of in-field experimentation and study. To facilitate a better understanding of the needs and challenges, we created a pilot system in a large government central hospital in Malawi, Africa. Learning from the pilot we developed and operationalized a point-of-care EMR system for managing the care and treatment of patients receiving antiretroviral therapy, which we put forth as a demonstration of feasibility in a developing-world setting. The pilot identified many unique challenges of healthcare delivery in the developing world, and reinforced the need to engineer solutions from scratch rather than blindly transplant systems developed in and for the West. Three novel technologies were developed over the course of our study, the most significant of which is the touchscreen clinical workstation appliance. Each of the novel technologies and their contribution towards successful implementation are described in the context of both an engineering and a risk management framework. A small comparative study to address data quality concerns associated with a point- of-care approach concluded that there was no significant difference in the accuracy of data collected through the use of a prototype point-of-care system compared to that of data entered retrospectively from paper records. We conclude by noting that while feasibility has been demonstrated the greatest challenge to sustainability is the lack of financial resources to monitor and support EMR systems once in place. iv TABLE OF CONTENTS TABLE OF CONTENTS.................................................................................................................................V LIST OF TABLES ..........................................................................................................................................X LIST OF FIGURES ......................................................................................................................................XII 1.0 INTRODUCTION.................................................................................................................................1 1.1 BACKGROUND........................................................................................................................1 1.2 RESEARCH QUESTION ..........................................................................................................1 1.3 IMPORTANCE OF THIS WORK...............................................................................................2 1.4 CONTRIBUTION TO KNOWLEDGE ........................................................................................3 1.5 GUIDE TO THE READER ........................................................................................................3 2.0 ENGINEERING A DEVELOPING-WORLD EMR: A FIRST APPROXIMATION..................................5 2.1 BACKGROUND TO THE PROBLEM........................................................................................5 2.2 PROPOSED INTERVENTION................................................................................................12 2.3 REQUIREMENTS ANALYSIS ................................................................................................14 2.3.1 Registration Module ....................................................................................................15 2.3.2 Admission/Discharge/Transfer Module .......................................................................16 2.3.3 Outpatient Module.......................................................................................................16 2.4 ADDRESSING CONSTRAINTS& LIMITED RESOURCES ....................................................17 2.5 FUNCTIONAL SPECIFICATION ............................................................................................18 2.5.1 Patient Registration Module........................................................................................18 2.5.2 Admission/Discharge/Transfer Module .......................................................................19 2.5.3 Outpatient Module.......................................................................................................19 2.6 DESIGN SPECIFICATION......................................................................................................20 2.6.1 General Design/Implementation Decisions .................................................................21 2.6.2 Hardware Selection.....................................................................................................23 v 2.6.3 Software Development................................................................................................25 2.7 PMIS DEPLOYMENT .............................................................................................................27 2.8 USER TRAINING....................................................................................................................30 2.9 OPERATION AND MAINTENANCE .......................................................................................30 3.0 BACKGROUND ................................................................................................................................32 3.1 OVERVIEW OF ELECTRONIC HEALTH RECORDS IN WESTERN MEDICINE...................32 3.1.1 Introduction to Electronic Health Records...................................................................32 3.1.2 Clinical Decision Support Systems..............................................................................35 3.1.3 Computerized Physician Order Entry (Care Provider Order Entry) .............................36 3.1.4 Point-of-Care...............................................................................................................36 3.1.5 The Clinical Workstation .............................................................................................37 3.1.6 Use of Touchscreen Technology in Healthcare ..........................................................38 3.1.7 Rate of Adoption and Barriers to Adoption in the West...............................................40 3.2 UNIQUE CHARACTERISTICS OF HEALTHCARE IN DEVELOPING COUNTRIES .............40 3.2.1 Low Literacy Rates......................................................................................................41 3.2.2 Absence of Unique Patient Identifiers .........................................................................42 3.2.3 HIV/AIDS Pandemic....................................................................................................43 3.2.4 Low Levels of Computer Literacy Among Health Workers..........................................44 3.2.5 Under-Trained and Inexperienced Clinicians ..............................................................45 3.2.6 Limited Healthcare Budget..........................................................................................45 3.2.7 Low Staffing Levels.....................................................................................................46 3.2.8 High Turnover Among Staff.........................................................................................47 3.2.9 Inadequate Security / High Risk of Theft.....................................................................47 3.2.10 Absence of Electrical Power in Many Health Facilities................................................47 3.2.11 Inadequate Infrastructure for Equipment Maintenance ...............................................48 3.2.12 Role of Routinely Collected Data in M&E of Public Health Initiatives..........................49 3.3 CURRENT EMR SYSTEMS IN DEVELOPING COUNTRIES ................................................50