Self-Sovereign Health Data Management: Opportunities and Challenges

Victoria L. Lemieux is an Associate Professor at the University of British Columbia School of Information. Her interests include risk to the availability of trustworthy records, in particular in blockchain record keeping systems, and how these risks impact upon transparency, financial stability, public accountability and human rights. Between 2014-2016, Dr. Lemieux worked with the World Bank on transparency and information management to support economic and social development, leading to various big data analytics projects and winning the Bank’s Big Data Innovation Award in 2015. In 2016, Dr. Lemieux founded, Blockchain@UBC, a multidisciplinary blockchain research cluster and in 2019 NSERC awarded her a CREATE grant to establish a multidisciplinary blockchain graduate program at UBC. Dr. Lemieux has won several awards for her research and professional contributions to the field of archives and records management.

There is a news story almost every day about how individuals’ personal data are being harvested, shared with and used by third parties without their consent and in ways that have real potential to cause harm. The result is an erosion of user trust and a reluctance to use services that gather sensitive information. This remains true for a significant percentage of individuals even if they could greatly benefit from receiving a personalized health service that they can use to understand their health risks and maintain or improve their overall health. Individuals’ reluctance may stem from uncertainty about how health data services will store and use their data over time. Recent revelations about how Facebook, 23&Me, and other platforms use individuals’ sensitive personal data validates concerns that consumers’ data may be shared with third parties without their informed consent. This presentation discusses how the' Personal Health Wallet Project, a collaboration between Molecular You, the University of British Columbia, StonePaper, and the Digital Technology Supercluster is addressing these concerns by enabling self-sovereign health records management. Information on the project is available.