Trade Bill Debate
Full Debate: Read Full DebateLord Clement-Jones
Main Page: Lord Clement-Jones (Liberal Democrat - Life peer)Department Debates - View all Lord Clement-Jones's debates with the Department for Business, Energy and Industrial Strategy
(3 years, 11 months ago)
Lords ChamberMy Lords, it is a great pleasure to follow the noble Baroness, Lady Sheehan. I support her Amendment 43 and share her concerns about big pharma, although I would go further and suggest that the profit motive should have no place in healthcare. Chiefly, I will offer three brief paragraphs in support of the cross-party Amendment 11, so ably introduced by the noble Baroness, Lady Thornton.
Looking at the excellent UNISON briefing on this amendment, I was taken back, as was the noble Lord, Lord Freyberg, to the Committee debate on the Medicines and Medical Devices Bill, in which we were discussing the place of artificial intelligence and big data in care and, of course, the dreaded algorithms. Clearly, this will be a fast-growing area of care, needing careful monitoring and democratic oversight, which is what this amendment seeks to achieve. What is decided by Parliament must not be undermined or overturned by free trade agreements. As the medicines Bill debate highlighted, these are big issues and there are huge issues around discrimination and potential misuse—accidental or otherwise—of the data, the algorithms and the whole approach.
I wish briefly to point noble Lords to the case of Henrietta Lacks in the US, including the treatment of her cells, the treatment of her data and the destruction of her privacy. It is an experience that surely should be studied as we face the loss of the protection of GDPR, as there remains uncertainty about the plans for WTO e-commerce rules and as there is grave concern about the way in which the UK-Japan agreement undermines UK domestic digital and AI regulation in healthcare services.
My Lords, I rise to speak to the health data aspects of Amendment 11, which has been mentioned and was so well introduced by the noble Baroness, Lady Thornton, and the noble Lord, Lord Freyberg. I would add to the point of the noble Baroness, Lady Thornton: I join her in deploring the fact that we are debating this group of amendments, which are so important in this area, impacting on the NHS, at this late hour.
NHS data is a precious commodity, especially given the many transactions between technology, telecoms and pharma companies concerned with NHS data. In a recent report, EY estimated that the value of NHS data could be around £10 billion a year in the benefit delivered. The Department of Health and Social Care is preparing to publish its national health and care data strategy in the new year, in which it is expected to prioritise the
“safe, effective and ethical use of data-driven technologies, such as artificial intelligence, to deliver fairer health outcomes.”
Health professionals have strongly argued that free trade deals risk compromising the safe storage and processing of NHS data.
Through this amendment, the objective is to ensure that the NHS—not US big tech companies and drug giants—reaps the benefit of all this data. This is especially important given what the Ada Lovelace Institute called in its report—The Data Will See You Now—the “datafication” of health, which, it says, has profound consequences for who can access data about health, on how we practically and legally define health data and on our relationship with our own well-being and the healthcare system. Health information can now be inferred from non-health data, and data about health can be used for purposes beyond healthcare. So harnessing the value of healthcare data must be allied with ensuring that adequate protections are put in place in trade agreements if that value is not to be given or traded away.
There is also the need for data adequacy to ensure that personal data transfers to third countries outside the EU are protected in line with the principles of the GDPR. Watering down the UK’s data protection legislation will only reduce the chances of receiving an adequacy decision. There is also a concern that the proposed National Data Strategy will lead to the weakening of data protection legislation, just as it becomes ever more necessary for securing citizens’ rights. There should, however, be no conflict between good data governance, economic growth and better government through the effective use of data.
The section of the final impact assessment of the Comprehensive Economic Partnership Agreement—CEPA—between the UK and Japan on digital trade provisions says that the agreement contains:
“Commitments to uphold world-leading standards of protection for individuals’ personal data, in line with the UK’s Data Protection Act 2018, when data is being transferred across borders. This ensures that both consumer and business data can flow across borders in a safe and secure manner.”
The Department for International Trade, as mentioned by the noble Lord, Lord Freyberg, issued a document headed “UK-JP CEPA—a good deal for data protection”. However, the agreement has Article 8.3, which appears to provide a general exception for data flows, where this is
“necessary to protect public security or public morals or to maintain public order”
or
“to protect human, animal or plant life or health”.
The question has been raised of whether this will override data protections and what its impact will be on access to source codes and algorithms. There is also the question of the combined effect of Article 8.84, on the free flow of data, which provides that:
“A Party shall not prohibit or restrict the cross-border transfer of information by electronic means, including personal information, when this activity is for the conduct of the business of a covered person.”
Article 8.80, on personal information protection, says:
“Recognising that the Parties may take different legal approaches to protecting personal information, each Party should encourage the development of mechanisms to promote compatibility between these different regimes.”
It is all very well making reassuring noises, but what public legal analysis of the language in the relevant articles—and how advocacy will be permitted despite this—are the Government going to provide? Why, for instance, are these articles included, which the EU for its part will not sign up to? Unless the Government do this, there will be zero trust in future trade deals, especially regarding the US.
To date, there have been shortcomings in the sharing of data between various parts of the health service, care sector and Civil Service. The development of the Covid-19 app and the way the Government have procured contracts with the private sector for data management have not improved public trust in their approach to data use. There is also the danger that the UK will fall behind Europe and the rest of the world unless it takes back control of its data and begins to invest in its own cloud capabilities. Specifically, we need to ensure genuine sovereignty of NHS data and that it is monetised in a safe way, focused on benefiting the NHS and our citizens.
With a new national data strategy in the offing, the Government can maximise the opportunities afforded by the collection of data and position the UK as a leader in data capability and protection. As Future Care Capital says in its briefing on the Bill:
“Any proceeds from data collaborations that the Government agrees to, integral to any ‘replacement’ or ‘new’ trade deals, should be ring-fenced for reinvestment in the health and care system, pursuant with FCC’s long-standing call to establish a Sovereign Health Fund.”
This is an extremely attractive concept. Retaining control over our publicly generated data, particularly health data, for planning, research and innovation is vital if the UK is to maintain its position as a leading life science economy and innovator. That is why, as part of the new trade legislation being put in place, clear safeguards are needed to ensure that in trade deals, our publicly held data is safe from exploitation, except as determined by our own Government’s democratically taken decisions.
My Lords, I refer to my entry in the register. This is a particularly important group of amendments, on health and the protection of data. I thank the noble Baronesses, Lady Thornton and Lady Sheehan, and the noble Lord, Lord Freyberg, for introducing them.
I will limit my remarks to the specific issue of data, which will be relevant to the recently reached super-agreement with Japan. It was discussed as recently as last week, when my noble friend Lord Grimstone spoke about the importance—I agree with him—of a greater exchange of data flows, particularly from that agreement. However, as the noble Lord, Lord Freyberg, said, it is extremely important, as set out in Amendment 11, to protect this data. I will give one example. The Government have been heavily dependent on vaccine trials for the three vaccines that are coming out. Would people readily submit to such trials and completing confidential surveys if there was any doubt that the data they submit would be treated confidentially?
If my noble friend Lord Younger of Leckie is not minded to support this amendment, will the Government table their own amendment to ensure the greater protection of data processing services?