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Who owns the data?: OpenData for Healthcare
1st July 2014, 9:00am – 11:00am
Organised in partnership with
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 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, leading 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 care.data, 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 care.data 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.
Please note: this is a closed event, through invitation only.
We have now posted a summary on the roundtable discussion which can be found here!
Parliamentary Office of Science and Technology
RCGP Research and Surveillance Centre
UCL Institute for Global Health
UCL Population Health Sciences
Department of Health
Computer Science, UCL
Cisco Consulting Services, Life Sciences, Health and Care
i-sense, the EPSRC IRC in Early Warning Sensing Systems for Infectious Diseases
Chatham House Centre on Global Health Security
UCL Computer Science
Royal College of General Practitioners
Roundtable Discussion - 2 hoursStarts: 9:00am Ends: 11:00am
We have now posted a summary on the roundtable discussion which can be found here: http://www.fdh.ucl.ac.uk/owns-data-opendata-healthcare-summary-roundtable-discussions/