National Data Guardian Recommends More Control for Patients Over Their Data as Government Announces Scrapping of Care Data Programme
The English National Data Guardian has recommended more control for patients over their data in NHS England.
Dame Fiona Caldicott has advocated there being a new consent and opt-out model.
She has said people should be able to opt out of their personal data being used for purposes beyond their direct care unless there is a mandatory legal requirement or an overriding public interest. Their data should not be automatically used for research unless they consent. NHS bodies should consider exploring the use of anonymised information instead, and patients’ consent would not be needed for that. Dame Fiona has also recommended stronger criminal sanctions for anyone who deliberately or negligently re-identifies individuals where their data has been anonymised.
A patient’s data should be able to be freely shared by a healthcare professional to support their care, although he or she could still ask for a particular piece of data not to be shared in a specific instance.
The government will now consult on Dame Fiona’s recommendations.
Meanwhile, in line with her position on patient consent, the government has announced it is scrapping the care data programme. The programme was going to be introduced previously to enable patient data to be freely shared to enable research. However, the programme was riddled with controversy as there was not a clear consent basis - instead, data may have been used in ways not explicitly consented by a patient unless he or she opted out of the scheme.