Healthcare Policy and Research, Cornell University, New York, New York, USA.
Columbia University Irving Medical Center, New York, New York, USA.
J Am Med Inform Assoc. 2021 Mar 1;28(3):646-649. doi: 10.1093/jamia/ocaa260.
Digital medical records have enabled us to employ clinical data in many new and innovative ways. However, these advances have brought with them a complex set of demands for healthcare institutions regarding data sharing with topics such as data ownership, the loss of privacy, and the protection of the intellectual property. The lack of clear guidance from government entities often creates conflicting messages about data policy, leaving institutions to develop guidelines themselves. Through discussions with multiple stakeholders at various institutions, we have generated a set of guidelines with 10 key principles to guide the responsible and appropriate use and sharing of clinical data for the purposes of care and discovery. Industry, universities, and healthcare institutions can build upon these guidelines toward creating a responsible, ethical, and practical response to data sharing.
电子病历使我们能够以许多新颖创新的方式利用临床数据。然而，这些进步给医疗机构提出了一系列关于与数据所有权、隐私泄露和知识产权保护等主题的数据共享的复杂要求。政府实体缺乏明确的指导，往往导致数据政策信息相互矛盾，使得医疗机构不得不自行制定准则。我们通过与各机构的多方利益相关者进行讨论，制定了一套包含 10 项关键原则的准则，以指导出于护理和发现目的对临床数据进行负责任和适当的使用和共享。行业、大学和医疗机构可以在此基础上制定负责任、合乎道德且实用的数据共享策略。
