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Calls for clearer consent over data sharing from people with diabetes

People with diabetes are often confused about the sharing of their personal data, according to a survey.

There was a “lack of understanding of existing consent processes” highlighted by the University of Warwick research aimed at exploring people’s views on how their data was shared.

Clinical data and information can help researchers and healthcare professionals improve care by revealing patterns leading to interventions to address any issues raised – but this study suggested processes around data collection and consent needed to be improved.

A team from the university’s Institute of Digital Healthcare (IDH) at WMG concluded that the participants were happy to share their data through a new system called the Dovetail Digital consent application.

It shares details between GP surgeries and gives people the opportunity to withdraw their consent using a smartphone application system, which tracks where their data has been shared.

The researchers surveyed 23 people with diabetes from a GP practice as well as 13 people with diabetes who worked there. The participants completed a series of questionnaires and then took part in focus group discussion. This established their understanding of current data sharing methods in a medical setting and whether they recalled giving consent.

Professor Theo Arvanitis, who took part in the study, said: “We discovered there was a lack of understanding of existing consent processes in place, in fact many patients did not have any recollection of having previously given consent to their data being shared. When we asked them what they thought about the digital consent application patients overwhelmingly favoured the digital consent application over existing practice, as they recognised the value of the capability offered by the application.”

Fellow researcher Dr George Despotou added: “The study participants welcomed an application that would ultimately contribute to improving their quality of case, whilst maintaining control over their data. In particular the study participants acknowledged the clarity of the consent application, and the ease with which they could review, as well as revoke existing consents.

“This was a very promising study on a technology that may be opening the way for highly innovative applications improving quality and efficiency of healthcare services, which patients would welcome, assured that ultimately they are in charge of their data.”

More research is now needed to establish whether people from a wider demographic also agree with the findings.

The study was published by the journal Digital Health.

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