A bi-directional data sharing platform for researchers and citizen science

为研究人员和公民科学提供双向数据共享平台

• 批准号: RGPIN-2021-02833
• 负责人: Görges, Matthias
• 金额: $ 2.62万
• 依托单位: University of British Columbia
• 依托单位国家: 加拿大
• 项目类别: Discovery Grants Program - Individual
• 财政年份: 2022
• 资助国家: 加拿大
• 起止时间: 2022-01-01 至 2023-12-31
• 项目状态: 已结题
• 来源: https://www.nserc-crsng.gc.ca/ase-oro/Details-Detailles_eng.asp?id=743503
• 关键词: bi; directional; data; sharing; platform

The proliferation of smartphones and home hub devices has generated huge amounts of largely untapped data and offers tremendous opportunities for the general public to contribute to scientific research and discovery. Our challenge lies with the need to create a trustworthy means of sharing data that allows a productive two-way exchange that preserves user privacy. Our short-term goal is to develop a mobile app and database system for the public and clinical researchers to share health data confidentially. This system will allow the public to better understand the health data they possess and to select which of these data they want to share safely with researchers. It will then allow scientists to navigate the donated data and later to share their findings with the people who provided the data. We have already built the tools we need to create such a system and solved some of the challenges that are involved in getting data out of smart devices and merging this information into databases that support research and help experts to make important decisions. We have done this is in complicated environments, like a hospital operating room, as well as in the home and even in low-resource and remote settings. My research program involves working closely with members of the general public as well as research scientists and clinicians to understand their needs and concerns. We will use techniques that put human beings at the centre of the design process to create an app that will allow users to visualize their data and guide them through selecting the data they want to donate in a safe and informed way. We will build the tools needed to donate data securely: obtaining data from smartphones and other smart home or wearable devices, transferring these data, and merging them with other information in a way that retains the data's meaning while also preserving its anonymity. Finally, we will work with our public, research, and industry partners to define how the app should be used for sharing research findings with the people who donated the data. We will build a prototype app and test it with our group of public and research users. This research program will provide valuable training for 2 PhDs and 1 Master's student, the engineers and data scientists of the future. Ultimately, our long-term goal is to extend this data-sharing system to work for a range of industry and government sectors to assist in the confidential exchange of data and create a scientific community with greater capabilities than academic researchers have available today. This system will advance Canada's data science industry and other sectors that rely on data that is collected from a network of devices. It will provide users and innovators with a deeper understanding of the effect of data sharing on creating new knowledge and enable a community research approach with a lasting impact across scientific disciplines.

智能手机和家庭中心设备的激增产生了大量尚未开发的数据，并为公众提供了为科学研究和发现做出贡献的巨大机会。我们的挑战在于需要创建一种值得信赖的数据共享方式，允许有效的双向交换，同时保护用户隐私。我们的短期目标是开发一个移动应用程序和数据库系统，供公众和临床研究人员保密地共享健康数据。该系统将使公众能够更好地了解他们拥有的健康数据，并选择他们希望与研究人员安全地共享哪些数据。然后，它将允许科学家浏览捐赠的数据，然后与提供数据的人分享他们的发现。我们已经建立了创建这样一个系统所需的工具，并解决了一些挑战，包括从智能设备中获取数据，并将这些信息合并到支持研究和帮助专家做出重要决策的数据库中。我们在复杂的环境中做过这个，比如医院的手术室，也在家里，甚至在资源匮乏和偏远的环境中。我的研究项目包括与普通公众以及研究科学家和临床医生密切合作，以了解他们的需求和担忧。我们将使用将人类置于设计过程中心的技术来创建一个应用程序，该应用程序将允许用户可视化他们的数据，并指导他们以安全和知情的方式选择他们想要捐赠的数据。我们将构建安全捐赠数据所需的工具：从智能手机和其他智能家居或可穿戴设备获取数据，传输这些数据，并以保留数据含义的方式将它们与其他信息合并，同时保持其匿名性。最后，我们将与公众、研究和行业合作伙伴合作，确定如何使用该应用程序与捐赠数据的人分享研究成果。我们将建立一个原型应用程序，并与我们的公共和研究用户组进行测试。该研究项目将为未来的工程师和数据科学家提供宝贵的培训，培养2名博士和1名硕士学生。最终，我们的长期目标是扩展这个数据共享系统，使其适用于一系列行业和政府部门，以协助机密数据交换，并创建一个比目前学术研究人员拥有更大能力的科学社区。该系统将推动加拿大的数据科学行业和其他依赖于从设备网络收集数据的部门。它将使用户和创新者更深入地了解数据共享对创造新知识的影响，并使社区研究方法能够在科学学科中产生持久的影响。