The Care.data programme that was due to be rolled out in 2014 was delayed following criticism of the way the information campaign supporting it was implemented. The new data-sharing initiative that will see patient information extracted from clinical records in order to support commissioning, planning and research will now not start taking patient data until a series of pilots starting Autumn 2014 have been completed.
MPS was amongst those that raised concerns about the programme, after 77% of GP members told us they did not think NHS England had given them enough information to properly inform patients.
The Health and Social Care Act 2012 has made it a legal requirement for healthcare providers (including GP practices) to share patient data with the Health and Social Care Information Centre (HSCIC). However, as a matter of policy, if a patient expressly objects, NHS England and the HSCIC will uphold the objection, except where there are other legal requirements, or a public health emergency.
Patients can object to confidential information being shared outside their GP practice – for any other purpose than direct care – by asking their GP practice to note this in their health record. They can also ask for confidential information to not be shared after it reaches the HSCIC.
It is clear that NHS England will continue with the programme but they have committed to review the public awareness campaign. Furthermore, the government amended the relevant legislation so that the HSCIC can only use its general disseminating powers to release anonymised information where there is a clear ‘health or adult social care or health promotion purpose’.
A GP’s principal responsibility concerning the care.data programme relates to the fair processing of information. Practices must ensure that they engage with the process and follow any guidance issued by NHS England material as this will put them in the best position in the event that a complaint is raised.
If you follow NHS guidance in engaging with the process we believe it is unlikely that a complaint or legal action would be successful. However, medicolegal cases always turn on their own unique facts, and members with specific queries should contact us on our advice line on 0800 561 9090, or in writing to firstname.lastname@example.org, to discuss the issues with one of our experienced advisers.