Government activity and investment seeks to advance the life science sector by providing improved access to health and care information to encourage data-driven research and innovation.
15 April 2020
The UK Government has launched a project to explore and weigh up the benefits and disadvantages of sharing health and social care data for research. The project, which was planned long before the outbreak of the Covid-19 pandemic, is co-funded by a number of organisations including the Sciencewise programme.
Keeping in mind how the project participants may have been impacted by the pandemic, the Government said that it will work with its partners to take this into consideration in the design of the dialogue and ensure that the resulting guidance remains relevant to a wide range of data sharing scenarios.
The Government said that the NHS and social care services hold a lot of information about individuals. Linking up this information would mean that it could be used by researchers and scientists to identify patterns and develop new ways to predict, diagnose and treat illness. The dialogue will explore public attitudes towards sharing health and social care data for data-driven research and innovation in England.
The Government added that it was aware of the concerns related to organisations with commercial interests using data generated by use of the publicly-funded NHS and social care services. ‘We’ve seen this many times in our engagement to date; previous pieces of research and in media, social media and public discussions…We will ask our public participants which benefits count as ‘good enough’ to make the use of data acceptable in their view,’ the Government added in a statement.
The public dialogue workshops will take place in autumn 2020 at four locations around the UK. A report summarising the findings from the initial workshops will be published during spring 2021. This will be used to publish guidance and a further dialogue workshop will be held that spring.