Herbert Wertheim School of Public Health and Human Longevity Science, University of California San Diego, La Jolla, CA, USA.
UC San Diego Altman Clinical and Translational Research Institute Dissemination and Implementation Science Center, University of California San Diego, La Jolla, CA, USA.
Transl Behav Med. 2024 Nov 16;14(11):637-642. doi: 10.1093/tbm/ibae049.
Data sharing, the act of making scientific research data available to others, can accelerate innovation and discoveries, and ultimately enhance public health. The National Cancer Institute Implementation Science Centers in Cancer Control convened a diverse group of research scientists, practitioners, and community partners in three interactive workshops (May-June 2022) to identify and discuss factors that must be considered when designing research for equitable data sharing with a specific emphasis on implementation science and social, behavioral, and population health research. This group identified and operationalized a set of seven key considerations for equitable data sharing-conceptualized as an inclusive process that fairly includes the perspectives and priorities of all partners involved in and impacted by data sharing, with consideration of ethics, history, and benefits-that were integrated into a framework. Key data-sharing components particularly important for health equity included: elevating data sharing into a core research activity, incorporating diverse perspectives, and meaningfully engaging partners in data-sharing decisions throughout the project lifecycle. As the process of data sharing grows in research, it is critical to continue considering the potential positive and adverse impact of data sharing on diverse beneficiaries of health data and research.
数据共享是将科学研究数据提供给他人的行为，它可以加速创新和发现，最终增进公共健康。国家癌症研究所癌症控制实施科学中心召集了一组多元化的研究科学家、实践者和社区合作伙伴，在三个互动研讨会上（2022 年 5 月至 6 月），确定并讨论了在设计公平的数据共享研究时必须考虑的因素，特别强调实施科学和社会、行为和人口健康研究。该小组确定并实施了一套公平数据共享的七个关键考虑因素——将其概念化为一个包容性的过程，公平地包括所有参与和受数据共享影响的合作伙伴的观点和优先事项，并考虑到伦理、历史和利益——这些因素被整合到一个框架中。对健康公平特别重要的数据共享组成部分包括：将数据共享提升为核心研究活动，纳入多元化的观点，并在整个项目生命周期中，有意义地让合作伙伴参与数据共享决策。随着数据共享在研究中的不断发展，必须继续考虑数据共享对健康数据和研究的不同受益人的潜在积极和不利影响。
