Guerrini Christi J, Majumder Mary A, Robinson Jill O, Cook-Deegan Robert, Blank Matthew, Bollinger Juli, Geary Janis, Gutierrez Amanda M, Shrikant Maya, McGuire Amy L
Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX, United States.
Consortium for Science, Policy & Outcomes, Arizona State University, Washington, DC, United States.
Front Big Data. 2023 Feb 6;6:1095119. doi: 10.3389/fdata.2023.1095119. eCollection 2023.
As entities around the world invest in repositories and other infrastructure to facilitate health data sharing, scalable solutions to data sharing challenges are needed. We conducted semi-structured interviews with 24 experts to explore views on potential issues and policy options related to health data sharing. In this Perspective, we describe and contextualize unconventional insights shared by our interviewees relevant to issues in five domains: data quality, privacy, equity, incentives, and sustainability. These insights question a focus on granular quality metrics for gatekeeping; challenge enthusiasm for maximalist risk disclosure practices; call attention to power dynamics that potentially compromise the patient's voice; encourage faith in the sharing proclivities of new generations of scientists; and endorse accounting for personal disposition in the selection of long-term partners. We consider the merits of each insight with the broad goal of encouraging creative thinking to address data sharing challenges.
随着世界各地的机构投资于存储库和其他基础设施以促进健康数据共享，需要有可扩展的解决方案来应对数据共享挑战。我们对24位专家进行了半结构化访谈，以探讨与健康数据共享相关的潜在问题和政策选择的观点。在这篇观点文章中，我们描述并将受访者分享的与五个领域问题相关的非常规见解置于背景中：数据质量、隐私、公平、激励和可持续性。这些见解质疑了对用于把关的精细质量指标的关注；挑战了对最大化风险披露做法的热情；提请注意可能损害患者声音的权力动态；鼓励对新一代科学家的共享倾向抱有信心；并支持在选择长期合作伙伴时考虑个人倾向。我们考虑了每一项见解的优点，其广泛目标是鼓励创造性思维以应对数据共享挑战。
