Commenting on the launch of the Department of Health and Social Care’s draft data strategy, Dr Farah Jameel, BMA GP committee executive team lead for IT, said:
“When used effectively, ethically and legally, data can play a pivotal role in improving the health of the population, whether this is for planning, research or for direct patient care.
“When patients interact with the NHS, they expect that the right staff have access to the necessary information about them so they get the treatment they need, regardless of whether this is at their GP practice, in a hospital or elsewhere. When this doesn’t happen, it’s frustrating for both patients and clinicians, and the situation we have at present needs improving, to facilitate better data-sharing between settings.
“Of course, everyone has a right to know what is happening with their healthcare data, what is being shared for wider purposes than just their own care, and who has access to it – as well as to have the final say on whether to share it or not.
“We have seen in recent weeks with the pausing of the GP Data for Planning and Research programme roll-out what happens when these issues are not communicated properly, and patients are not given an opportunity to take part in such important discussions. Therefore, the Government and NHSX must follow through with commitments to engage fully with both the public and the profession, addressing any concerns they may have about this strategy and specifically proposals around sharing data more widely than for direct care. The final strategy will only be successful if it has the full confidence of both the public and the medical profession that data will be kept safe and secure and subject to robust safeguards. We support access to data to improve healthcare delivery, but patients must be able to trust the system and have confidence their data are subject to the highest legal and ethical standards.
“We note that the draft strategy repeatedly underlines the importance of transparency, while asserting that people must have ownership of their own data, and these must continue to be overriding principles going forward.
“Meanwhile, although steps to update IT infrastructure and ensure interoperability within the NHS and wider care system are long overdue, an overreliance on individuals’ access to, or proficiency with, certain technologies must not leave those without such access or proficiency disadvantaged.
“We will be considering the draft strategy in detail and responding formally on behalf of our members and their patients in due course.”
Notes to editors
The BMA is a professional association and trade union representing and negotiating on behalf of all doctors in the UK. A leading voice advocating for outstanding health care and a healthy population. An association providing members with excellent individual services and support throughout their lives.