Authors
Patty Kostkova, Helen Brewer, Simon De Lusignan, Edward Fottrell, Ben Goldacre, Graham Hart, Phil Koczan, Peter Knight, Corinne Marsolier, Rachel A McKendry, Emma Ross, Angela Sasse, Ralph Sullivan, Sarah Chaytor, Olivia Stevenson, Raquel Velho, John Tooke
Publication date
2016/2/17
Source
Frontiers in public health
Volume
4
Pages
7
Publisher
Frontiers Media SA
Description
Research on large shared medical datasets and data-driven research are gaining fast momentum and provide major opportunities for improving health systems as well as individual care. Such open data can shed light on the causes of disease and effects of treatment, including adverse reactions side-effects of treatments, while also facilitating analyses tailored to an individual’s characteristics, known as personalized or “stratified medicine.” Developments, such as crowdsourcing, participatory surveillance, and individuals pledging to become “data donors” and the “quantified self” movement (where citizens share data through mobile device-connected technologies), have great potential to contribute to our knowledge of disease, improving diagnostics, and delivery of healthcare and treatment. There is not only a great potential but also major concerns over privacy, confidentiality, and control of data about individuals once it is shared. Issues, such as user trust, data privacy, transparency over the control of data ownership, and the implications of data analytics for personal privacy with potentially intrusive inferences, are becoming increasingly scrutinized at national and international levels. This can be seen in the recent backlash over the proposed implementation of care.data, which enables individuals’ NHS data to be linked, retained, and shared for other uses, such as research and, more controversially, with businesses for commercial exploitation. By way of contrast, through increasing popularity of social media, GPS-enabled mobile apps and tracking/wearable devices, the IT industry and MedTech giants are pursuing new projects without clear …
Total citations
2016201720182019202020212022202320249203532493532289
Scholar articles
P Kostkova, H Brewer, S De Lusignan, E Fottrell… - Frontiers in public health, 2016