Lord Freyberg
Main Page: Lord Freyberg (Crossbench - Excepted Hereditary)My Lords, it is always a pleasure to follow the noble Lord, Lord Desai—and yes, I will be covering that area. I thank the noble Lord, Lord Brooke, for putting down this timely and important debate.
Others will wish—some have done so already—to raise concerns about the extent to which health policy-making, the commissioning and provision of NHS services and the pricing of drugs and life-critical equipment could be impacted by future trade deals that might flow from the UK exiting the European Union. These are all noble concerns worthy of exploration in the time we have today, but I want to draw attention to an issue that I feel strongly about and that I fear has been neglected, despite its critical importance. I am in no doubt that the future of our health services, particularly new life-saving treatments and technologies, will be data-driven in many important respects. I am persuaded that the data which will underpin them—health data about UK citizens, which the NHS currently stewards on their behalf and with their consent—is very much on the table. It will provide a key focus for forward-looking trade negotiations, or else serve as an increasingly important bargaining chip, no matter what the Government might say about the NHS not, in and of itself, being up for grabs.
I have spoken at length on other occasions in this place about the potentially unique value of UK health data, as have other noble lords, and do not wish to repeat myself in this debate, when we are focused on making the case for broad-ranging and increasingly urgent protective measures. I will simply say that trade negotiations and the deals that result from them are all about capturing value, and it must be captured in the public interest, as well as for public benefit, at this pivotal time. I remind noble Lords that today is 4 July, and the people are said to have willed us to take back control of our laws, our borders and our money, not lower the drawbridge, roll out the red carpet and herald a great health data giveaway.
Notably, a question was asked in the other place on 18 June about this very issue, focusing on our future trading relationship with the United States of America. It followed President Trump’s recent state visit, and I note, without prejudice, that the response of the Secretary of State for Health and Social Care did not offer the questioner the comfort sought at that time. The Minister stated that,
“the NHS is not on the table in trade talks. We now have that assurance from the Americans. NHS data must always be held securely, with the appropriate and proper strong privacy and cyber-security protections”.—[Official Report, Commons, 18/6/19; col.114.]
All well and good, you might think, but in practice health data is not owned by the NHS per se and is not, as a matter of interest, subject to the control of the Secretary of State for Health and Social Care in any meaningful sense—at least, not where future trade negotiations are concerned.
The adequacy of the USA’s data protection provisions, which make it possible for us to share data with American companies, is currently determined by the European Union and covered by the EU-US Privacy Shield, which has been criticised for, among other things, data protection deficiencies, concerns about surveillance and, more recently, the lack of protection it affords where data is transferred for commercial purposes. Notably, however, under Schedule 1, Chapter 5 of the EU exit regulations, passed in this place back in February, the Secretary of State for the Department for Digital, Culture, Media and Sport will have sole authority to define what data is and is not on the table in international trade deals which the UK might enter into in the event that Brexit goes ahead, including patients’ data.
More precisely, the Minister will be able to specify, as the noble Baroness, Lady Brinton, has already stated, the adequacy of a third country; a territory or one or more sectors within a third country; an international organisation; or a description of such a country, territory, sector or organisation. As such, he or she will be empowered, Henry VIII-fashion, to make or break the digital elements of future trade agreements that we might agree or acquiesce to regarding data controlled by our NHS. I want to make plain my concern. Any exercise of these new powers before a comprehensive public engagement effort is undertaken and an explicit and meaningful commitment is made to radical transparency could result in mass opt-outs on the part of the general public and do irreparable damage to patient care, as well as to our vital life science and technology industries.
Happily, the same section of the regulations affords the same Secretary of State the opportunity to rule out or take off the table the data controlled by our publicly funded and accountable health sector globally, until such time as those measures are put in place. Will the Minister therefore commit to such a protection in the interest of building and maintaining public trust in the Government’s otherwise welcome strategy: namely, to maximise the value of healthcare data while ensuring a fair distribution of associated benefits?
In conclusion, can the Minister comment on the Government’s appetite to blaze a trail in data protection for NHS patients, at the same time as championing our much-heralded global and entrepreneurial future? A new Prime Minister could lead by way of international example and develop a new, dedicated health and care privacy shield so that safeguarding individuals is approached as the flip-side of a coin which proactively and proudly promotes some of UK plc’s best future industries.