Use of patient data in healthcare and research

The Academy  is developing a programme of public dialogue workshops, exploring the issues arising from future data technologies that use or collect health information.

Scoping

There has been much public dialogue focusing on the current use of patient data, but less has been undertaken exploring how future data driven technologies might impact on this.

A recent report by the Royal Society and the British Academy highlighted that very few studies have investigated attitudes to new and future uses of data. In addition, while some studies have explored potential near-term applications of data technologies, none so far have considered future worlds enabled by data.[1]

To address this, in November 2017, the Academy and Understanding Patient Data commissioned a programme of activities with Ipsos MORI to explore public, patient, and healthcare professionals’ views about new and emerging data-driven technologies that use patient data in healthcare and research.

The report of the public dialogue workshops is now being used to inform an Academy policy project. The project will develop a set of principles which can be used to ensure that the use of patient data in developing new technologies, and their subsequent application, reflect public and patient perspectives.

[1] The Royal Society & British Academy (2017). Data governance:public engagement review. https://royalsociety.org/~/media/policy/projects/data-governance/data-governance-public-engagement-review.pdf

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