Organizational Factors in Clinical Data Sharing for Artificial Intelligence in Health Care

Abstract

ImportanceLimited sharing of data sets that accurately represent disease and patient diversity limits the generalizability of artificial intelligence (AI) algorithms in health care.ObjectiveTo explore the factors associated with organizational motivation to share health data for AI development.Design, Setting, and ParticipantsThis qualitative study investigated organizational readiness for sharing health data across the academic, governmental, nonprofit, and private sectors. Using a multiple case studies approach, 27 semistructured interviews were conducted with leaders in data-sharing roles from August 29, 2022, to January 9, 2023. The interviews were conducted in the English language using a video conferencing platform. Using a purposive and nonprobabilistic sampling strategy, 78 individuals across 52 unique organizations were identified. Of these, 35 participants were enrolled. Participant recruitment concluded after 27 interviews, as theoretical saturation was reached and no additional themes emerged.Main Outcome and MeasureConcepts defining organizational readiness for data sharing and the association between data-sharing factors and organizational behavior were mapped through iterative qualitative analysis to establish a framework defining organizational readiness for sharing clinical data for AI development.ResultsInterviews included 27 leaders from 18 organizations (academia: 10, government: 7, nonprofit: 8, and private: 2). Organizational readiness for data sharing centered around 2 main constructs: motivation and capabilities. Motivation related to the alignment of an organization’s values with data-sharing priorities and was associated with its engagement in data-sharing efforts. However, organizational motivation could be modulated by extrinsic incentives for financial or reputational gains. Organizational capabilities comprised infrastructure, people, expertise, and access to data. Cross-sector collaboration was a key strategy to mitigate barriers to access health data.Conclusions and RelevanceThis qualitative study identified sector-specific factors that may affect the data-sharing behaviors of health organizations. External incentives may bolster cross-sector collaborations by helping overcome barriers to accessing health data for AI development. The findings suggest that tailored incentives may boost organizational motivation and facilitate sustainable flow of health data for AI development.

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“…Therefore, collecting a substantial number of cases is absolutely critical. Unfortunately, in the current framework, patients or healthcare institutes lack sufficient incentives to contribute data because there are no additional rewards, and there are concerns about the privacy and security of personal information [ 96 ]. To address this dilemma, apart from some open-source medical datasets [ 15 , 97 ], there are emerging blockchain-based technologies that incentivize patients to upload medical data [ 98 ].…”