Use of Patient Data — House of Commons, 2021-06-24
Topic: Health
David Michael Davis (Conservative, Centre-right): I do absolutely agree. I think there is a common interest, frankly, between everybody in this House, including those on the Front Bench. The worst thing that can happen to this is a failure of trust. The failure of public trust in the care.data system saw some 2 million people opt out, and that is not what we want to see here, but we could easily exceed that figure with this programme now A lack of trust will undermine the usefulness of the dataset the Government hope to collect. The Guardian reported this month: "All 36 doctors’ surgeries in Tower Hamlets…have already agreed to withhold the data" had the collection gone ahead on 1 July as was planned. Other parts of the country are seeing more than 10% of patients withdraw their data via their GP surgery, and that is with little to no public awareness campaign. Much of this would have been avoided had the Government trusted Parliament and the public with a detailed and carefully thought-through plan. As the BMA noted: "Rushing through such fundamental changes to confidential healthcare data, losing the confidence of the public and the profession, will severely undermine the programme and threaten any potential benefits it can bring" It is entirely correct Despite the errors so far, this proposal need not necessarily be consigned to the ash heap of NHS history. There are ways of safely achieving the vast majority of what the Government want. The programme OpenSAFELY is a new analytics platform, principally authored by Dr Ben Goldacre, Liam Smeeth and Seb Bacon, that was created during the pandemic to provide urgent data insights, so I know the Health Secretary will be very familiar with it. Working with 58 million NHS records distributed across a range of databases—not centralised, but on a range of databases—their software maintains health data within the secure systems it was already stored on. It is not transported outside the existing servers and it does not create a central honeypot target The programme sees the data, but the researcher does not. Furthermore, all activity involving the data is logged for independent review. The way it works is that the researcher sets up the experiment, and the programme returns the results, such as a hypothesis test, a regression analysis or an associational graph. At no point does the researcher need to see the raw patient data; they simply see the outcome of their own experiment. This is very important because the biggest risk with any new data system is losing control of data dissemination. Once it is out, like Pandora’s box, you cannot close the lid OpenSAFELY gets us 80% to 90% of the way to the Government’s objectives. Operated under rigorous access controls, it could give the vast majority of the research benefit with very little risk to the security of the data. Therefore, this is a viable approach providing there is a properly thought-through opt-out system for patients. This approach, so far, has been severely lacking: where are the texts, the emails and the letters to the patients that should have been there at the beginning? On the "Today" programme earlier this week, the Health Secretary indicated that he was now willing to contact every patient. That is very welcome. I hope he is now writing to every single patient involved in this proposed database and informing them properly. That information should be in easy-to-understand English or other community language, not technical jargon. Everything in the letter must be easily verifiable: clear facts for clear choices. The letter should have the approval of the relevant civil organisations that campaign on privacy and medical data issues to give the letter credibility. Unlike the disastrous scenes of only a few weeks ago, this will mean that patients should be able to opt out through their choice of a physical form with a pre-paid return, an easily accessible form online, or a simple notification of their GP. As well as the physical letter, a reminder should be sent to them shortly before their data is accessed, which, again, should give the patient a clear way to change their mind and opt out. The overall aim must be to give patients more control, more security and more trust in the process, and that requires very high levels of transparency However, my understanding is that the Government want to go further than the 80% or 90% that we could do absolutely safely. They want to allow, I think, partial downloads of datasets by researchers, albeit under trusted research environment conditions. They may even go further and wish to train AIs in this area, or allow outside third-party companies to do so. In my view, that is a bridge too far. One of the country’s leading professors of software security told me only this week that it is difficult to ensure that some designs of AI will not retain details of individual data. The simple fact is that at the moment AI is, effectively, a digital technology with analogue oversight. Other researchers argue for other reasons that they need to have more direct access to the data. Again, as I understand it, the Government’s response is downloading partial samples of these databases under the control of technology that will track the researcher’s every click, keystroke and action, and take screenshots of what their computer shows at any point in time. I am afraid that I am unpersuaded of the security of that approach. Downloading any of these databases, even partially, strikes me as being a serious risk The stark fact is that whether it be data downloads, AI or other concerns that we are not yet aware of, there are significant ethical and risk implications. If the Government want to go beyond what is demonstrably safe and secure, an opt-out system is not sufficient. In this scenario, a database would only be viable as an opt-in system, with volunteers, if you like: people who have decided they are happy that their data is used in a system that is perhaps not perfectly secure. The risk is too great to work on the presumption of consent that an opt-out system has. The Government must make these risks of exposure and privacy absolutely clear to those willing to donate their data. It is obvious that an opt-in system will be significantly constrained by a much smaller data sample, but that is the only way we should countenance such risks. My strong recommendation to the Secretary of State is that the Government pursue the first stage properly with a closed technology like OpenSAFELY that can provide proper security, proper access for researchers, and proper reassurance to the public There is no doubt that this is a complex issue. However, it would be a dereliction of our duty if this House did not hold the Government to account on what could have been, and could still be, a colossal failure. Whether it intended it or not, the Department of Health has given us the impression that it did not take the privacy and security of our personal health records sufficiently seriously. This is extremely damaging to the Government’s cause, which I have no doubt is well-meaning. The Department needs to explain to the House how it will address the legitimate concerns and safeguard this most sensitive of personal data. Only by properly respecting the privacy of the citizen, and by obtaining freely given informed consent, can the Department deliver on its prime purpose, which must be enhancing the health of the nation—something that I know is absolutely close to the Secretary of State’s heart.