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

智能手机和家庭集线器设备的激增产生了大量基本上未开发的数据，并为普通公众提供了为科学研究和发现做出贡献的巨大机会。我们面临的挑战在于需要创建一种可靠的数据共享方式，以实现保护用户隐私的高效双向交换。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共享的数据。然后，它将允许科学家浏览捐赠的数据，并在稍后与提供数据的人分享他们的发现。我们已经构建了创建这样一个系统所需的工具，并解决了从智能设备中获取数据并将这些信息合并到数据库中所涉及的一些挑战，这些数据库支持研究并帮助专家做出重要决策。我们已经在复杂的环境中做到了这一点，比如医院手术室，也包括在家里，甚至在资源匮乏和偏远的环境中。我的研究计划涉及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关切。我们将使用设计过程中以人为中心的技术来创建一款应用程序，该应用程序将允许用户可视化他们的数据，并引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，同时保持数据的匿名性。最后，我们将与公众、研究和行业合作伙伴合作，定义应该如何使用该应用程序与捐赠者共享研究成果。我们将构建一个原型应用程序，并与我们的公众和研究用户组进行测试。这项研究计划将为2名博士和1名硕士研究生、未来的工程师和数据科学家提供有价值的培训。最终，我们的长期目标是将这种数据共享系统扩展到一系列行业和政府部门，以帮助进行保密的数据交换，并创建一个具有比目前学术研究人员更强大的能力的科学社区。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的数据的部门。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对科学学科产生持久影响。

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.