GP leaders have said that NHS England’s flagship patient record sharing scheme, care.data, should be an opt-in system and patients’ records should only be extracted through ‘patients’ explicit and informed consent’.
GPC’s lead on the issue informed the conference that NHS England had committed to abide by the findings of an independent review of the pilot running between 100-150 practices.
Dr Beth McCarron-Nash also told Pulse that she welcomed NHS England’s decision to review the pilots, which will look at patients’ awareness of the scheme, as well as matters on data quality.
LMC members also said that any extracted patient records ‘should be pseudonymised or anonymised’ before leaving the practice.
They conference insisted that any patient information that may be extracted should ‘not be sold for profit’ and should only be used for the purpose of ‘improving health and care delivery’.
Speaking to Pulse after the vote, Dr McCarron-Nash said: ‘ What we’ll do is we’ll obviously inform Tim Kelsey of the overwhelming decision of LMC Conference that GPs feel that patients have a right to say what information is released via care.data. That will be our position, and we’ll have to see what will happen regarding negotiations after that.’
She added: ‘I welcome the announcement that Dame Fiona [Caldicott] has agreed to oversee and evaluate the pilots prior to them being rolled out, because it’s absolutely vital that they get this right.’
‘The public and doctors have lost confidence in care.data, and any perception of good has been lost because of their absolutely diabolical information campaign. Which actually was just a disaster.’
‘The most important thing is that it is evaluated, and especially in regards to the evidence they have communicated with patients.’
Dr Kate Gurney, from Devon LMC supported the motion and urged assembled doctors to ‘put aside your medical hats and think like patients.’
Dr Gurney drew attention to the need for patients to be appropriately informed about the sharing of their data, and reminded the conference – with a sample of her own home’s junk mail – that the initial leaflets informing patients about care.data arrived alongside pizza menus, or not at all.
Dr Gurney said: ‘I feel very strongly we should be asking patients to atively opt in to any data sharing, and also be able to assure them that any data is fully anonymised.’
Speaking in opposition to the motion, GPC Scotland representative for Tameside Dr Andrew Cowie told conference the motion could disrupt record sharing schemes in the other devolved nations.
‘I am anxious that conference is making binding decisions that will prevent GPC from engaging in constructive discussion to improve matters.’
Motion 66 in full – carried
AGENDA COMMITTEE to be proposed by BEDFORDSHIRE That conference believes the introduction of care.data has been nothing short of a disaster and:
(i) approves the decision of NHS England to put its roll out on hold until the autumn
(ii) believes that GPs have been placed in a difficult position in respect of the demands of the Health and Social Care Act and the Data Protection Act
(iii) asserts that data should be pseudonymised or anonymised before it leaves the practice
(iv) asserts that extraction should only take place with the explicit and informed consent of patients opting-in
(v) insists that it should only be used for its stated purpose of improving health care delivery, and not sold for profit.
04 December 2023
04 December 2023