A nationwide campaign is needed to inform the public about a new system to extract data from patients’ records, according to our national body.
The government has extended a deadline to 1 September for people to make choices about how information in their NHS GP records is shared with other bodies such as research organisations. This came after an outcry about the original end of June deadline, which patient representatives said had not been publicised well enough.
Healthwatch England put out a joint statement on 8 June with National Voices, the Patients Association and the Richmond Group of Charities, welcoming the government’s new deadline.
“In previous engagement work the public have told us that they are in favour of the NHS using their data for medical research if they understand how this information will be used and can opt out if they so wish. However, ongoing public support for this depends on complete transparency and clear communication from the NHS when things change,” the organisations said.
“Over the next few months we need to see a proper nationwide campaign on this, reaching out to people so they can make an informed choice about how their own individual medical records are used to support research.”
Healthwatch England is sitting on a national working group to help NHS leaders communicate the plans properly to the public and we will publish further details for local people in due course.