The Health and Social Care Information Centre has pledged to contact a potentially large number of patients who objected to the Care.data programme, after it emerged that their opt-outs could unintentionally exclude them from NHS services such as bowel screening.
In a letter to the Commons health committee released yesterday, the information centre admitted that patients who had objected to it sharing their data would not, under current arrangements, be approached for some direct care services.
The letter said patients who had lodged a “type 2” objection (see box, below) would “not be approached for direct care services like e-prescribing, bowel screening, e-referrals or e-pathology reporting”. However, these objections have not yet been acted upon because data extraction under Care.data has not yet begun.
The centre was unable to tell HSJ how many patients were involved, in what could be a significant and costly patient engagement exercise. Privacy campaign group medConfidential said that of the several GPs it had spoken to “more than 1,000 patients in each of their practices have registered a ‘type 2’ opt-outs”.
A medConfidential statement added that “while there is no way to tell how representative these figures are, it suggests that hundreds of thousands and possibly more” could be affected.
An information centre source told HSJ the potential for patients to miss out on direct care services as a result of opting out of Care.data was an “unintended consequence” and that the body would “resolve the matter”.
The letter from information centre chair Kingsley Manning to health committee chair Sarah Wollaston said: “A member of the public who has registered a ‘type 2’ objection in its present form may not have understood that this will mean that as a result, they will not be approached for direct care services like e-prescribing, bowel screening, e-referrals or e-pathology reporting.”
The letter said the information centre had agreed to contact “those patients that recorded this type of objection in order to ensure the objection request is fully understood”.
NHS England national director for patients and information Tim Kelsey promised the committee that those who opt out of the Care.data programme would see no impact on their direct care.
He also said around 80 GP practices out of an estimated 265 that were eligible had signed up to pilot Care.data across the “pathfinder” clinical commissioning groups.
The Care.data project intends to link patients’ GP records with their hospital records in order to create a rich database for research purposes. NHS England had initially intended to begin extracting data in autumn 2014 but the programme has been dogged by concerns about patient confidentiality.
A spokeswoman for the Information Centre said: “Patients have the right to know about the way their data is used and to make choices about this. The [Information Centre] is committed to ensuring we play our part in enabling the public and patients to exercise that choice fully.
“This is a hugely complex area and requires overall system solutions which are transparent to the public. We are committed to working closely with bodies including NHS England and the Department of Health, to create system-wide policies for consent and objections.”
Type 2 objections explained
The Health and Social Care Information Centre Guide to Confidentiality in Health and Social Care sets out two ways in which patients can object to their data being shared:
- A “type 1” objection means patients can object “to information about them leaving a general practice in identifiable form for purposes other than direct care”.
- A “type 2” objection means patients can object to any information about them leaving the Health and Social Care Information Centre in identifiable form.