Harnessing Generalizable Real-World Ophthalmic Big Data: Descriptive Analysis of the Bodhya Eye Consortium Model for Collaborative Research.

Abstract

Background: Eye care organizations and professionals worldwide are increasingly focusing on bridging the gap between population health and medical practice. Recent advances in genomics and anthropology have revealed that most Indian groups trace their ancestry to a blend of 2 genetically distinct populations: Ancestral North Indians, who share genetic affinities with Central Asians, Middle Easterners, Caucasians, and Europeans; and Ancestral South Indians, genetically distinct from groups outside the Indian subcontinent. Studies conducted among North Indian populations can therefore offer insights that are potentially applicable to these diverse global populations, underscoring significant implications for global health.

Objective: The Bodhya Eye Consortium is a collaboration among 8 high-volume nonprofit eyecare organizations from across North India. The consortium aims to harness real-world data consistently and with assured quality for collaborative research. This paper outlines the formation of the consortium as a proposed model for controlled collaborative research among the leading eyecare organizations of North India.

Methods: We detail the creation and effective implementation of a consortium following a structured road map that included planning and assessment, establishing an exploratory task force, defining specialty areas, setting objectives and priorities, and conducting a SWOT (strengths, weaknesses, opportunities, and threats) analysis. Central to this process was a comprehensive data audit aimed at standardizing data collection across all participating organizations.

Results: The consortium currently comprises 9 organizations, each represented in the governance structure by the Governing Council. Scientific standards for published research are established and overseen by the Scientific Committee, while the Conflict Resolution Committee manages any unresolved disputes. The consortium's working groups, organized by various eyecare specialties, collaborate on research projects through virtual interactions. A foundational step in this process was the organizationwide data audit, which revealed that most organizations complied with accurate and standardized data collection practices. Organizations with deficiencies in data completeness developed action plans to address them. Subsequently, the consortium adopted data collection proformas, contributing to the publication of high-quality manuscripts characterized by low dropout rates.

Conclusions: The collaborative research conducted by the Bodhya Eye Consortium-a group of high-volume eyecare organizations primarily from North India-offers a unique opportunity to contribute to scientific knowledge across various domains of eyecare. By leveraging the established heterogeneity of anthropological and genomic origins within the population, the findings can be generalizable, to some extent, to European, Middle Eastern, and European American populations. This access to potentially invaluable, generalizable data has significant global health implications and opens possibilities for broader collaboration. The model outlined in this descriptive paper can serve as a blueprint for other health care organizations looking to develop similar collaborations for research and knowledge sharing.