The Great North Care Record is to switch to an explicit opt-in model of consent, replacing the current implied consent model where patients have to opt-out of information sharing, to one where they chose to opt in.
Speaking at EHI Live on 1 November, Connected Heath Cities’ director and chief clinical information officer at Northumberland, Tyne and Wear NHS Foundation Trust, Dr Joe McDonald, highlighted his motto of ‘The secret of consent? Get Consent’.
Under the new proposed guidelines for the Greate North Care Record, patients will now have full control over their data, instead of having to choose to opt out.
McDonald recalled how at a recent patient workshop at GNCR, one participant called the implied consent model as ‘London b****ks’.
Under the new model, patients will be able to chose online what their information sharing preferences were.
For example, they can decide whether they want their information shared for research purposes or not.
Communication with patients and explaining why data sharing is so important will play a vital part in making the new citizen preference model work, McDonald added.
“You have to build a trusted brand with a clear vision,” he said.
“When asked to give up personal information, people will mainly ask ‘why do you want it and who am I sharing my information with so your message must be clear.”
One line of communication will be through people on the ground, McDonald said.
“People trust clinicians but you must give them time to communicate,” he said.
“Use social media, get a website and a helpline so you can explain the concept.”
The Great North Care record was introduced in 2016 across the North East and North Cumbria region.
The record allows NHS healthcare professionals treating a patient to view an electronic summary of their GP held medical records.
In February it was announced that 96% of GP practices in the North East had signed up to the Great North Care Record.
This allowed secondary care providers to have access to the GP record of around 3.6 million people.