National Collaborative Surveillance Measures in Diabetic Care: Addressing Avoidable Blindness Open Access

Long, Devida (Summer 2019)

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Background: Among the 422 million people reported by the WHO with diabetes, approximately 1 in 3 have some form of diabetic retinopathy. Diabetic Retinopathy (DR) is an eye disease complication that is caused by damage to the blood vessels of the light-sensitive tissue at the back of the eye (retina). (Mayo 2018). One in ten people will develop a vision-threatening form of the disease and Diabetic Retinopathy is one of the top causes of vision loss in working adults in the world (IAPB 2016). As the impact of DR continues to grow across the United States, it is important to explore whether a new National Eye Surveillance System (NES) could enhance patient engagement, cross-specialty treatment measures, and prevalence estimates.

Methods: This project utilized a mixed method approach which included informal interviews with relevant stakeholders, a literature review, and data systems assessment. Reviews were conducted of eye disease registries (both in the U.S. and abroad), and medical and insurance claims system structures. These reviews helped to inform surveillance standards and plan development components. Lastly, high- level implementation and risk mitigation strategies were discussed to address data access and security measures needed for HIPAA compliance.

Results: The Literature review suggested that leveraging technology to create a national system with multiple interfaces can improve patient engagement and treatment outcomes across specialties. The user interface functionality would allow multiple stakeholders access to real-time data. This would provide patients and medical providers with longitudinal reporting capacities of eye health and treatment regime on a national scale. This would also arm providers with follow-up care and treatment option data, reports which could otherwise take weeks to generate.

Conclusion: There is an apparent need to improve yearly vision screening in order to facilitate early intervention, as early intervention reduces prevalence of the vision-threatening stage of disease. (IAPB 2016). The development of a national system can improve prevalence estimates, eye diagnoses, education and care management. However, other factors which influence DR rates such as obesity, and socioeconomic factors should be further explored.


International Agency for the Prevention of Blindness (IAPB). (2016). What is avoidable blindness-Diabetic Retinopathy. Retrieved from

Mayo Clinic. (2019) Diabetic Retinopathy. Retrieved from

National Eye Database (NED). (2019). About NED. Retrieved from

Table of Contents

Chapter 1 Introduction 4

Background, Problem and Purpose 4

Diabetes - Global Perspective 6

Diabetic Retinopathy 7

Chapter 2 Methods 7

Introduction 7

Description of 8

Procedures 8

Interviews with Ophthalmic Professionals (U.S.) 8

Establishment of System Requirements 10

Instruments 11

Description of Current Registry Data Sources 12

Chapter 3 Implementation 15

Introduction 16

Implementation Background 16

Fighting Retinal Blindness Registry - Strengths & Limitations (Australia) 16

National Eye Database (NED) - Strengths & Limitations Malaysia 19

U.S Data Sources- Insights for National Surveillance System 21

Medicare Claims Data - Strengths & Limitations 22

IRIS Database - Strengths & Limitations 23

The Plan Implementation Purpose & Objectives 23

Stakeholders 24

Database Design & Information Flow 24

System Requirements High-Level Technological Considerations 26

Chapter 4 - Discussion 27


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