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

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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.