Emergence of Organizational Forms of Data Governance in the Big Data Era

今天，通过信息和通信技术，收集和汇总了以前难以想象的“大数据”的种类和数量。这个项目解决了这个大数据时代的一个重大挑战——我们如何利用这些资源为社会造福，在许多关于这些数据的价值和对个人隐私和安全的巨大风险的竞争中？在卫生保健部门，从迅速扩大的数字化卫生数据资源中尽可能产生最大价值，对于解决与成本、质量、安全和获取有关的紧迫社会问题至关重要。卫生数据治理仍然受到技术、体制和竞争因素的挑战。如何管理卫生数据——由谁、出于何种目的、代表谁以及通过何种组织形式和结构——是至关重要的问题。该项目考察了组织形式是如何围绕卫生数据资源发展的。将卫生数据视为共享的社会资源，而不仅仅是组织资产，这就提出了新的治理形式能否发展、影响其出现的因素以及哪些因素能够或限制对这些资源的有效治理的问题。这项研究的结果将为政策制定以及卫生系统领导者和技术创新者提供新知识，帮助他们了解如何改变组织形式，从卫生数据中产生更多价值，从而改善卫生保健系统并造福公共福利。调查结果将分发给有关的卫生数据组织和协会，如全国卫生数据组织协会。这一跨越通信、公共卫生和信息技术管理的跨学科项目有助于提高卫生数据管理、数据科学和信息政策的研究能力和教育课程。本项目探讨了三个研究问题：(1)出现了哪些组织形式来应对大数据治理的挑战和机遇？(2)哪些制度和社会技术因素促进或抑制了数据治理新组织形式的建立？(3)不同的组织形式如何处理社会和组织利益相关者多重的、可能相互冲突的利益和价值观，以提升数据资源的价值实现？这些问题是通过一系列嵌入式案例研究的健康数据治理的新兴组织形式，全付款人索赔数据库（APCD）在美国卫生保健部门解决。这三个阶段包括对国家层面的APCD运动的历史分析，包括所有付款人索赔数据库委员会，对四个州的APCD进行深入的案例研究，以及对夏威夷州的APCD项目进行实地分析。通过比较案例分析，本研究考察了30个国家项目中组织形式的显著差异是如何和为什么存在的，以及通过这些资源实现的社会、组织和个人价值的含义。该项目支持将治理形式出现的过程和结果理论化，编写一系列关于apcd的嵌入式案例研究报告，并创建有助于分析其他卫生数据领域治理的分析代码本和结构。该奖项反映了美国国家科学基金会的法定使命，并通过使用基金会的知识价值和更广泛的影响审查标准进行评估，被认为值得支持。

Today, previously unimaginable varieties and volume of "big data" are collected and aggregated through information and communication technologies. This project addresses one of the grand challenges of this big data era - how can we harness these resources for societal good amidst many competing claims on the value to be derived from these data and the substantial risks for individual privacy and security? In the health care sector, yielding the greatest value possible from rapidly expanding digitalized health data resources is essential to address pressing societal issues related to cost, quality, safety and access. Health data governance remains challenged by technical, institutional and competitive factors. How health data are governed - by whom, for what purposes, on whose behalf and through what organizational forms and structures - are vital questions. This project examines how organizational forms develop around health data resources. Viewing health data as shared societal resources rather than merely as organizational assets calls into question whether new governance forms can develop, what influences their emergence, and what factors enable or limit effective governance of these resources. The findings from this study will develop new knowledge with application for policy settings as well for health system leaders and technology innovators on how to alter organizational forms to produce more value from health data and thereby improve the health care system and benefit public welfare. Findings will be disseminated to relevant health data organizations and associations such as the National Association of Health Data Organizations. This interdisciplinary project spanning communications, public health and information technology management contributes to research capabilities and educational curricula for health data management, data science, and information policy. This project investigates three research questions: (1) What organizational forms emerge to address challenges and opportunities of big data governance? (2) What institutional and sociotechnical factors enable or inhibit the establishment of new organizational forms of data governance? (3) How do varied organizational forms address the multiple, possibly conflicting, interests and values of societal and organizational stakeholders to enhance value realized from data resources? These questions are addressed through a series of embedded case studies of an emerging organization form of health data governance, the All-Payer Claims Databases (APCD) in the U.S. health care sector. The three phases include a historical analysis of the APCD movement at the national level including the All-Payer Claims Database Council, in-depth case studies of four states' APCDs, and field-level analysis of the State of Hawai'i APCD project. Through comparative case analysis, the research examines how and why there is significant variation in organizational forms among 30 state projects and what are the implications for the societal, organizational, and individual value realized through these resources. The project supports theorizing the process and outcomes of governance form emergence, develops a series of embedded case study reports of APCDs, and creates an analytical codebook and structure useful for analyzing governance of other health data domains.This award reflects NSF's statutory mission and has been deemed worthy of support through evaluation using the Foundation's intellectual merit and broader impacts review criteria.