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.
10 November 2017 @ 11:16
Whilst I’m very supportive of a system for processing patient data based around individuals’ data preferences, being pragmatic, politicians will never endorse this approach. Any care record system (used only for direct care purposes) does not necessarily require consent as a legal basis and some would argue that even opt-out, when a system is being used to facilitate direct care, is a bit of a misnomer.
Politicians have too much to gain by bowing down to big pharma to ensure as much information is out there, as is publicly tolerated, i.e. the moves to remove consent for the processing of identifiable data for research purposes. Lets not forget that whilst research is vital, it’s big pharma who tend to set the agenda and reap the significant profits from new products.
My view is that implied consent will continue to exist in some form even post GDPR. Why? Where information is being used for direct care, there are other (clinical) issues that mean that consent is required and in some instances this will marry over with sharing of information and we are told that permission is required. Secondly, the health sector (particularly the private businesses) have not historically done well in relation to fair processing of personal data. “Implied consent” serves multiple purposes, which is why even though it’s not recognized by GDPR, I envisage the term will continue to be used 5 years from now.
All this said, I would much rather a clear expectation and uniform structure to data processing, which I strongly feel data preferences achieves. Not least, it empowers the individual, which politicians love to do particularly when a patient presents with an avoidable (costly) health issue. Choice is only ever good when it fits the political will however.
8 November 2017 @ 08:22
Hooray! A decision-maker within the NHS who’s actually got some public awareness. Just think what care.data could have achieved by now if they’d gone down this route a few years ago
7 November 2017 @ 09:19
Just to be clear. We’ll be getting citizens to opt in for sharing some of their identifiable data for research purposes at scale. We already share information for direct care using a point of care consent process and MIG. We aim to be the best connected and research consented place in the world.