Health and Care Bill — House of Lords, 2022-02-09
Topic: Health
Philip Alexander Hunt (Labour, Centre-left): My Lords, we come to a debate on confidentiality of patient data. We debated some of this last week in considering my Amendment 145, on the power to disclose information relating to patients. I think there was general agreement then that public confidence in the handling of patient data by the NHS depends on the safeguards that are put in place. Without that public confidence, the huge potential we can see in the digital transformation of healthcare will not be realised, and that is behind the concerns I have raised in this series of amendments. They are linked together and are designed to probe just how secure patient data is Amendment 298 relates to information standards as set out in Clause 81, page 71, line 34, and would leave out proposed new section (6B). I am hoping the Minister will briefly set out the reasons for this proposed new section, how the power is intended to be used and what guarantees are in place in relation to patient confidentiality Amendment 299 concerns the importance of maintaining an accredited data access environment. I propose restricting "existing dissemination of information via access in an accredited data access environment" The Bill is drafted on the basis of a departmental "commitment that GP data will be used exclusively in a Trusted Research Environment" I do not think that is sufficient. It is important that the "new clause amends the dissemination powers of NHS Digital to reflect stated policy and the promises made both to patients and the profession". The term "accredited data access environment" is used in my amendment, rather than "Trusted Research Environment" because while research information must be protected, so should information used for planning and managerial purposes Amendment 300 relates to shared care records and is aimed at probing "what progress has been made in relation to the introduction of shared care records", the process by which patients can opt out of the record, and the rigour of that process. The potential of shared care records is, of course, a key part of the digital revolution. They allow staff involved in a patient’s care to access health and care records and to provide better joined-up care across different parts of the health and social care system. The problem is that consent for shared care records is basically a postcode lottery. In some places, the patient has not been told what has been created for them and if they do happen to find out, the way they can opt out varies. Some places have interpreted NHSX’s vague information governance guidance to mean a one-stop shop for opting out, whereas other places require patients to go to each different care provider, which is a very difficult and challenging thing to do Most people have no idea that the shared care records programme is happening. The application of the national data opt-out, introduced in 2018, is inconsistent in practice and does not prevent many other uses of patients’ data, in respect of which patients already have legal rights to consent. The debacle, twice now, of the Care.data saga shows the importance of getting this right, and of informing the public Amendment 304 concerns the soon-to-be-abolished duties of the Health and Social Care Information Centre, to be taken on by NHS England. The clause in question relates to data and the general duties of the information centre. My amendment would "require NHS England to balance out the needs of research and planning with patient" opt-out from data use "for purposes beyond direct care" My final amendment, 305, is in many ways the most important in this group. Very simply, I believe that patients should be able to see how the NHS uses data about them. My amendment aims to "allow any patient with a verified NHS login to see a personalised data usage report containing detail of every use of data about them for purposes beyond direct care, and showing how the duties" of the information centre have been implemented. The only way forward for wider use of NHS patients’ data involves the NHS providing more factual information to patients about those uses. I do not believe that the NHS understands this yet, but I am convinced that we need to make some move down this route if we are really to command the confidence we need to see in the future My other amendments, Amendments 302 and 303, really should have been grouped under the Healthwatch debate we had what seems like a very long time ago. The noble Lord, Lord Patel, and I are concerned to see that Healthwatch gets access to all relevant data in order to carry its responsibilities effectively. I hope the Minister will be able to agree to this. I beg to move.