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Who Owns the Data? Open data for Healthcare

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On July 1st 2014, as part of the first UCL Festival for Digital Health, i-sense and UCL Public Policy hosted a roundtable discussion on the theme of open data in healthcare. 

This meeting involved a closed panel, chaired by Sir John Tooke and comprising of thirteen expert panellists including Director at the Royal College of GPs, Simon Lusignan, award-winning writer and broadcaster, Ben Goldacre, Deputy Director at the Department of Health, Peter night and our very own Director, Rachel McKendry.

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 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 addressed this important debate.

Over the two- hour meeting leading experts at UCL, industry representatives, policy makers, and healthcare practitioners came together to discuss a broad range of themes and address the following questions:

Q1. What are the benefits of opening up clinical data for health research?
Q2. How can data from different sources (public and private, including non-traditional sources) be merged to deliver healthcare benefits?
Q3. How do we balance access to data with patient privacy?
Q4. What policy changes are needed to responsibly develop big data for health?
Q5. What are the lessons learned from care.data?

You can read the summary of discussions here. Ultimately, the panel sought to address 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.