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Who owns the data: Open Data for digital health

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i-sense and UCL Public Policy will host an open data debate as part of the UCL Festival for Digital Health

The potential of research on large medical datasets to save lives is becoming of increasing interest to researchers worldwide. It enables a better understanding of disease causes and side-effects of treatments and supports a personalised medicine approach. Developments such as tracking of self-reported symptoms via Twitter and search engines, crowdsourcing, participatory surveillance, patients pledging to became ‘data donors’ and the ‘quantify self’ movement (where citizens share data through mobile device-connected technologies) may be real game-changers for our knowledge of disease. This will ultimately lead to more accurate diagnostics and improved delivery of healthcare and treatment.

However, despite the clear advantages offered, there remains serious concerns over data confidentiality; what happens to public data once it is shared? Issues such as user trust, data privacy, transparency over the control of data ownership, and the personal intrusion of data analytics are becoming increasingly scrutinised at national and international levels. This can be seen in the recent backlash over the proposed implementation of, which enables NHS patients to share data with researchers and, controversially, with businesses for commercial exploitation.

In the absence of transparent regulation, and during the extended consultation period on the proposals, this roundtable policy discussion event will address this important debate. Leading UCL experts, industry representatives, policy makers, healthcare practitioners and patients will come together to discuss the pitfalls and opportunities of big data in healthcare, issues of responsibility and accountability, and how public policy can support a balanced agenda that safeguards personal information whilst enabling the use of data to improve public health.

Organised by i-sense and UCL Public Policy in conjunction with the UCL Festival of Digital Health

Please note: this is a closed event, through invitation only.