Many people worry when they hear that organisations are using and sharing digital health data. What are they up to? Meanwhile, those organisations may worry that being more open could lead people to complain about the decisions they make.
It鈥檚 a vicious circle that can stop good things happening.
A lack of transparency over the extent of data sharing by the UK National Health Service on 1.6 million patients with Google鈥檚 artificial intelligence company DeepMind has been reported by New 杏吧原创. This was bound to , not least given towards commercial organisations accessing medical information.
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Opacity fuels fear. The danger is this could lead to a future where we lock down our medical records.
Breaking the cycle
How can we free up health data鈥檚 potential to lead to the kind of outcome many people would welcome 鈥� earlier diagnoses for example?
Trust must be built on openness 鈥� about how data is being used, who has access to it, for what purpose and with what impact. To start to build trust, organisations need to invite open discussion about the benefits of all such projects.
But this is a two-way thing, and we as individuals providing health data also have to be prepared to engage positively.
It won鈥檛 always be easy. When a data-sharing project benefits society as well as the people providing the data, we are more likely to support it. Donating DNA data to the makes sense, because it contributes to advances in science and medicine, and because participants may learn something about their own medical conditions.
More than the minimum
But often it won鈥檛 be that clear cut. Healthcare providers may hesitate to explain some projects because the benefits are not so obvious and people may question them. But questions provide an opportunity to show expertise and build trust.
New data protection rules are waiting in the wings. The will establish some requirements for openness and transparency from organisations collecting and processing personal data. Even then, for trust to be established, it has to be about doing more than the minimum to be compliant.
Digital health data is a rapidly growing resource with huge potential for good. Only with transparency front and centre will that potential stand a chance of being fulfilled.
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