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

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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.