The EMIS NUG welcomes the announcement by NHS England that the care.data extractions have been postponed until September. Let us hope that this will now give some time to discuss the precise implementation and uses of care.data so that the benefits of the information held in primary care can be maximised, while not compromising the relationships of trust required to deliver high standards of primary care to patients.
As public awareness of care.data has risen (all be it slowly) we have seen a rise in the opt out rate: is this just because people don’t understand, or is it because NHS England have misread the public mood of trust for those in authority?
The next six months must not be used by NHS England to lecture us on how it’s all OK, but must be used to engage in a genuine consultation with the many groups and individuals (professional and patient) who have understanding and experience in this field. It must be used to ensure that there is absolute clarity about who will have access to information and what information; it must be used to look at the processes and ensure that those which minimise the risks are used (eg pseudonimisation at source); it must be used to develop a very clear guideline on the purposes for which the information will be shared (is it for support of health and social care only, or could it be for any use as suggested in paragraph 2.3.1 of the HSCIC Information Governance Assessment) ; and it must be used to engage in an honest debate about the risks and benefits such that patients can make appropriate decisions based on their own circumstances.
If the public are to accept this programme they need to be convinced of the benefits and the governance, this can only be accomplished by open debate. When clearly explained to patients many are happy for their information to be shared in any way required, some opt to share with HSCIC, but not beyond, while others are happy for their hospital data to be used freely, but prefer to keep their GP data private. Yet others are happy to share for a specific identified project, but wish to give their own consent on a case by case basis. If we are to maximise the benefits of the data held in primary care all of these views must be respected.
It is also a time to reflect on the fact that before care.data NHS England has already commissioned GPES, a system for extracting information in a case by case manner with clear consent and governance processes controlled by the practice as data controller. How much of what NHSE is now seeking to do through a single large database could be managed more appropriately on a case by case basis using GPES?
On behalf of it members the NUG will continue to raise questions where they need raising. It will continue to champion the use of Pseudonimisation at source.