Queen’s Speech — House of Lords, 2020-01-09
Topic: Health
Valerian Bernard Freyberg (Crossbench, Unknown): My Lords, I wish to restrict my remarks on the gracious Speech to health. With a new year and a new Government, I thought it an appropriate moment briefly to discuss trust and transparency in the context of the NHS, given how prominently it featured during the election campaign The election campaign involved numerous pledges from opposition parties about data protection and ethics and, in particular, measures intended explicitly to provide the public with confidence about the extent to which health data controlled by the NHS would feature in trade negotiations post Brexit or be subject to new provisions designed to "reign in" the perceived excesses of big pharma and tech. The Conservative Party, now the Government, took a different tack and pledged significant—although, as yet, unspecified—investment in R&D and the fourth industrial revolution Against this backdrop, the campaign saw significant press coverage of "health data deals" entered into by the Government, as well as talk of meetings attended by senior officials and representatives of global businesses to explore how best to "exploit" the value of UK health data, valued at an estimated £10 billion by Ernst & Young in recent months. I encourage colleagues to take a look at the online reactions to this coverage from privacy advocates, tech experts and front-line professionals working in health, as well as from the general public. For me, it highlighted a number of important issues First, we have a way to go before we can be assured that people are adequately informed of their rights and the measures that we have put in place to date to protect them. Secondly, we have a way to go before we can be assured that we can count on the trust that is, when all else is said and done, the real asset to which I am referring today. Thirdly, we have even further to go before we can be assured whether and how people want health data deployed, in conjunction with third parties, to stimulate the research and innovation that I know we would all wish to encourage. Here, it seems that transparency is fundamental to our cause. I therefore ask the Minister, in response to the gracious Speech, how the Government plan to build and maintain public trust over the months ahead and whether he will commit today to promoting radical transparency with that in mind I look forward to further detail of the Government’s medicines and medical devices Bill over the coming months, which I am sure, like me, colleagues will take a keen interest in debating. I note also that, as I speak, the Government are busy recruiting personnel to staff the national centre of expertise, to be hosted by NHSX, which will offer legal and commercial advice to NHS organisations in recognition of the data deals they are expected to enter into with third parties over the coming period—something that I have long encouraged. However, how will the national centre of expertise, with its remit to develop a national policy framework, take steps to ensure that whatever results is fit for purpose in a fast-evolving and inherently global marketplace, driving significant investment flows into data-driven health research and innovation In particular, I am keen to understand what the Minister makes of recent developments pertaining to health data in China and India, and data localisation restrictions on sensitive personal and biometric data. Replying on behalf of DCMS on 7 January to my Question for Written Answer, the noble Baroness, Lady Barran, stated: "The Government considers that in the UK, data localisation should be limited to cases that are specific and well-justified" Perhaps the Minister might expand on this Answer and set out in more detail what the Government mean by this and what areas might fall into this category. I would also welcome his assessment of measures in California’s new data protection law which afford individuals the right to restrict "sale" of data about them by organisations that they nevertheless consent to process it Finally, I ask the Minister to reassure noble Lords that the Government have no plans to lower the bar either in the course of taking back control of the UK’s data protection laws, or in negotiating future trade deals post Brexit.