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利用可推广的真实世界眼科大数据:菩提亚眼联合研究模型的描述性分析以开展合作研究

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

作者信息

Sood Ishaana, Sabherwal Shalinder, Mathur Umang, Jain Elesh, Bhadauria Madhu, Agrawal Deepshikha, Khurana Ashi, Mittal Vikas, Mahindrakar Avinash, Govindahari Vishal, Kulkarni Sucheta, Nischal Ken K

机构信息

Dr Shroff's Charity Eye Hospital, New Delhi, India.

Bodhya Eye Consortium, India, India.

出版信息

Online J Public Health Inform. 2024 Sep 30;16:e53370. doi: 10.2196/53370.

DOI:10.2196/53370
PMID:39348171
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11474137/
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.

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/5ea3/11474137/820b34914b6e/ojphi_v16i1e53370_fig1.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/5ea3/11474137/820b34914b6e/ojphi_v16i1e53370_fig1.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/5ea3/11474137/820b34914b6e/ojphi_v16i1e53370_fig1.jpg
摘要

背景

全球的眼科护理组织和专业人士越来越关注弥合人群健康与医疗实践之间的差距。基因组学和人类学的最新进展表明,大多数印度群体的祖先可追溯到两个基因上截然不同的人群的混合:北方印度祖先人群,他们与中亚人、中东人、高加索人和欧洲人有基因亲缘关系;以及南方印度祖先人群,在基因上与印度次大陆以外的群体不同。因此,在北印度人群中进行的研究可以提供可能适用于这些不同全球人群的见解,凸显了对全球健康的重大影响。

目的

菩提亚眼科学联盟是印度北部8家大规模非营利眼科护理组织的合作项目。该联盟旨在持续且高质量地利用真实世界数据进行合作研究。本文概述了该联盟的组建情况,将其作为印度北部领先眼科护理组织之间进行可控合作研究的一种提议模式。

方法

我们详细介绍了一个联盟按照结构化路线图的创建和有效实施过程,该路线图包括规划与评估、设立探索性特别工作组、确定专业领域、设定目标和优先级以及进行SWOT(优势、劣势、机会和威胁)分析。这一过程的核心是全面的数据审核,旨在使所有参与组织的数据收集标准化。

结果

该联盟目前由9个组织组成,每个组织在治理结构中由理事会代表。已发表研究的科学标准由科学委员会制定和监督,而冲突解决委员会管理任何未解决的争议。由各种眼科护理专业组织的联盟工作组通过虚拟互动在研究项目上进行合作。这一过程中的一个基础步骤是全组织范围的数据审核,结果显示大多数组织遵守准确和标准化的数据收集做法。数据完整性存在缺陷的组织制定了行动计划来解决这些问题。随后,该联盟采用了数据收集表格,有助于发表以低脱落率为特征的高质量手稿。

结论

菩提亚眼科学联盟(一个主要由印度北部大规模眼科护理组织组成的团体)开展的合作研究提供了一个独特的机会,可为眼科护理各个领域的科学知识做出贡献。通过利用该人群中既定的人类学和基因组起源的异质性,研究结果在一定程度上可以推广到欧洲、中东和欧裔美国人人群。获取这些潜在的宝贵且可推广的数据对全球健康具有重大影响,并为更广泛的合作开辟了可能性。这篇描述性论文中概述的模式可以为其他希望开展类似研究与知识共享合作的医疗保健组织提供蓝图。

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