Oral Answers to Questions
David Davis Excerpts(4 days, 13 hours ago)
Commons ChamberRead Full debate Read Hansard Text Watch Debate Read Debate Ministerial Extracts
Wes Streeting
I can absolutely give my hon. Friend that reassurance. It was appalling that the previous Government not only cancelled lots of the deprivation-linked funding put in place by the Labour Government but threw all that progress into reverse. That is not the approach that this Government will take. We will have funding based on need, not pork barrel politics. I can assure my hon. Friend that his constituents in Stoke-on-Trent will benefit from our sincere commitment to tackling health inequalities.
David Davis (Goole and Pocklington) (Con)
Wes Streeting
I can certainly give the right hon. Gentleman the assurance that we are looking right across NHS estates to make sure we are making best use of them, particularly in the context of neighbourhood health. I have heard the case he has made about how neighbourhood health services could be provided on that site. I hope commissioners have heard the case, but if not I will make sure that they do and that he gets the relevant meetings he needs.
Oral Answers to Questions
David Davis Excerpts(6 months, 2 weeks ago)
Commons ChamberRead Full debate Read Hansard Text Read Debate Ministerial Extracts
Wes Streeting
I strongly agree with my hon. Friend. As I said during the general election campaign—it was quoted regularly by the SNP—all roads lead to Westminster. Down that road from Westminster is a record increase in funding for the Scottish Government through the Barnett formula. I know the Scottish Government published their own NHS recovery plan just before Christmas, and I look forward to reading it, although I know some have expressed concerns about the lack of detail in the plans to drive down waiting times. The Scottish people can therefore compare and contrast with the ambition of our elective reform plan, which was announced by the Prime Minister yesterday, and then decide at the next Scottish elections who they trust to govern: the SNP with its rotten record, or a Labour Government who will get on and deliver.
David Davis (Goole and Pocklington) (Con)
The Secretary of State knows that I wrote to him before Christmas about the planned ward closures and degradation of services at Goole and district general hospital. Doing so will take beds, facilities and employees away from the national health service, which will do nothing but undermine his real attempts to reduce waiting lists and all the plans he announced yesterday. Will he look at the trust-level decision systems that lead to such catastrophic decisions that will undermine every aspect of NHS strategy and all that he is trying to do?
Wes Streeting
I thank the right hon. Gentleman for writing to me before Christmas. I recognise the pressures that have been placed on NHS commissioners in recent years and the pressure that that has put on service configurations. I tend to support the devolution of decision making, with decisions about service reconfigurations taken closer to the communities they serve. I recognise also that commissioners do not always get it right, which is why engagement with Members of Parliament and other democratically elected representatives is important. Ministerial oversight is important, too. We will look seriously at the issues he raises and talk to NHS leaders, and I know he will be doing the same. This Government are determined to give NHS leaders the tools to do the job, so that we can get the right care in the right place at the right time, with a better experience for patients and better value for taxpayers.
Mental Health Treatment and Support
David Davis Excerpts(2 years, 1 month ago)
Commons ChamberRead Full debate Read Hansard Text Watch Debate Read Debate Ministerial Extracts
Debbie Abrahams (Oldham East and Saddleworth) (Lab)
As we have heard from colleagues from all parts of the Chamber, we are in a mental health crisis. Unfortunately, it is becoming increasingly endemic. I pay tribute to the work of our offices, including my own team, who regularly deal with critical cases of mental ill health, including suicide calls, for which we have had to put on special training. That was happening before the pandemic too, and we need to recognise that.
Recent figures show that seven out of 10 secondary school children are expressing mental health distress. That should worry us. It has already been mentioned, but we know that there are risk factors and risk conditions that can contribute to the onset of a mental health problem. I will speak about the importance of early intervention a little later.
Oldham has the 37th highest prevalence of mental health disorders in the country. That puts it in the highest 20% in the UK; for reference, the Prime Minister’s constituency is in the lowest 6%. On the other side of the coin to this higher prevalence is our reduced funding. Research from the Children’s Commissioner found that child and adolescent mental health services in Oldham received over £100 less in spending per child from the Government than those on the Isle of Wight. Similarly, in 2019 The Guardian reported that London had nearly double the number of psychiatrists in the north of England. As I have mentioned, it is true that things have got worse since the pandemic, but that is not just a consequence of the pandemic.
I want to focus on what needs to happen, because we need a serious plan, and I am not from the Minister’s speech that the Government recognise that. The Opposition want to recruit thousands of new mental health professionals, which will go some way to addressing the lack of parity of esteem between mental and physical health services. That needs to be reflected in the Government’s NHS workforce plan. We have waited ages for the Government to produce that and it makes the partygate report look quite prompt. As the Government sit on their hands and fail to produce a plan, the crisis continues to get worse. That is why we will commit to the biggest expansion of the NHS workforce in history. We must also look at the metrics we use. For example, we would guarantee treatment within a month. That would make such a big difference to all those people stuck on what feel like endless waiting lists in Oldham, Saddleworth and across the country.
Finally, I am pleased to see our party committing to a paradigm shift from the medical to the social model of health, focusing on prevention in communities as well as treatment. The Leader of the Opposition has committed himself to that in Labour’s health mission, and we have also pledged that there will be a mental health hub in every community. We will go further than that: our commitment to addressing the rampant health inequalities across our country includes tackling the inequity in mental health. As we develop national policy from education to transport and finance, we will consider the impacts on health and health inequalities, including mental health. This is the difference a Labour Government will make. The next Labour Government have a plan that is both radical and credible, and for my constituency and for our country, it is long overdue.
Mr David Davis (Haltemprice and Howden) (Con)
On a point of order, Madam Deputy Speaker. You will be well aware, because you have chaired many of the debates, that there has been a campaign in this House for over a year to stop SLAPPs—strategic lawsuits against public participation—which are used by very rich men to oppress free speech in this country. Just in the last hour or so, the High Court has ruled one of those SLAPPs cases out of order: the case of Mr Mohamed Amersi against the ex-Member of this House Charlotte Leslie has been struck down. In my view, that is a great victory for free speech. Because it is so important, I give notice that I will be raising the matter on the Adjournment.
Madam Deputy Speaker (Dame Eleanor Laing)
I thank the right hon. Gentleman for his point of order. It of course needs no comment from the Chair, except to say that I think the whole House will agree with him that this is a good judgment and an important step forward. I do indeed recall chairing many debates on the matter, and I am sure the whole House will look forward to his raising it on the Adjournment. We will recommence the debate with Danny Kruger.
Oral Answers
David Davis Excerpts(2 years, 3 months ago)
Commons ChamberRead Full debate Read Hansard Text Watch Debate Read Debate Ministerial Extracts
Neil O’Brien
We have increased real-terms spending on general practice by over a fifth since 2016, and as a result there are now 10% more appointments happening every month. We are grateful to GPs for that. We have more doctors and clinicians, but we want to keep going, and I am happy to discuss this with anyone who has useful ideas to keep us powering forward.
Mr David Davis (Haltemprice and Howden) (Con)
Yesterday, when the Prime Minister met business, the huge value of the NHS database was highlighted. Unfortunately, the previous occasions on which the NHS has tried to open its database have been unmitigated disasters. Will the Secretary of State give an undertaking to stick closely to the recommendations of the Goldacre report so that we can deliver the database while protecting the privacy of patients?
Steve Barclay
It is a huge opportunity. My right hon. Friend and I have discussed this matter outside the Chamber, and I met Ben Goldacre in the summer to discuss his fantastic work in the context of covid. It is absolutely right that, given the potential of artificial intelligence, there are huge opportunities in relation to health inequalities and allowing us to better target provision. I think my right hon. Friend would agree that we should do that through the prism of patient consent. One thing that we are trying to build into the NHS app is the ability to better empower the patient to decide what they wish to sign up to and what they would like their data shared with.
Public Health
David Davis Excerpts(3 years, 7 months ago)
Commons ChamberRead Full debate Read Hansard Text Read Debate Ministerial Extracts
Sajid Javid
The right hon. Gentleman asks a fair question. I will answer precisely that question in just a moment.
Mr David Davis (Haltemprice and Howden) (Con)
We know that the vaccines are only 33% effective at reducing omicron infection. We know that the reduction of infectiousness falls dramatically—to zero after 12 weeks, in the case of AstraZeneca. What does the Secretary of State view as better for protecting people from infection: daily lateral flow tests or vaccination?
Sajid Javid
I think both have a role to play. In the NHS and in social care, there is very frequent testing—lateral flow testing, in the case of the NHS, and often PCR testing—but I think vaccination has a role to play. At this point in time, many people still have two doses; that is rapidly changing. When they have a third dose or their booster dose, that gives them an even higher degree of protection.
Covid-19 Update
David Davis Excerpts(3 years, 7 months ago)
Commons ChamberRead Full debate Read Hansard Text Watch Debate Read Debate Ministerial Extracts
Sajid Javid
Of course everyone should follow the rules—no one is above the rules. The hon. Lady refers to the exchange that took place earlier in Prime Minister’s questions; the Prime Minister set out the Government’s position in that exchange.
Mr David Davis (Haltemprice and Howden) (Con)
Where is the evidence that vaccine passports actually work? France introduced them in the summer and now has more cases than it had in the March peak. Austria, Greece and the German states that have used them are in the same position, with more cases. Vaccinated people can still catch and transmit the disease, and there is a sizeable chance that passports will introduce a false sense of security, giving exactly the reverse result to the one the Secretary of State intends, so why is he using them?
Sajid Javid
When we set out plan B for the autumn and winter in respect of the challenges we would face, whether from covid or flu, we set out in that plan how and why we thought vaccine passports could help in certain circumstances. Also, it is not straightforward to compare different countries. Different countries have taken a whole host of different measures at different points in time—for example, there can be huge differences in vaccination rates or in respect of other measures that may or may not be in place—so I caution my right hon. Friend in comparing, for example, France with the UK.
Oral Answers to Questions
David Davis Excerpts(3 years, 8 months ago)
Commons ChamberRead Full debate Read Hansard Text Watch Debate Read Debate Ministerial Extracts
Maria Caulfield
I reassure the hon. Gentleman that cancer has remained an absolute priority for the NHS during the pandemic, as it will continue to be. The funding that has been awarded to deal with long-term electives includes funding for cancer referrals. Some amazing work is being done by our cancer alliances, which are looking to deal with the urgent backlog that has developed during the pandemic.
Mr David Davis (Haltemprice and Howden) (Con)
Sajid Javid
My right hon. Friend has raised this issue with me before, but he is right to raise it again, because proper use of data is important to the future of the NHS. He may have noted our announcement yesterday that we are merging NHS Digital and NHSX with NHS England, which will enable us to do a much better job with data. I will of course look carefully at that report, and I should be happy to meet him to discuss it further.
Coronavirus Act 2020 (Review of Temporary Provisions) (No. 3)
David Davis Excerpts(3 years, 9 months ago)
Commons ChamberRead Full debate Read Hansard Text Watch Debate Read Debate Ministerial Extracts
Sajid Javid
I understand my right hon. Friend’s concerns and, rightly, many people across the House share those concerns. He will know that when the original Bill was brought to Parliament, the Government said, rightly, that any measures would be kept in place only for as long as necessary and that they would have to be proportionate. Even before coming to the House today with the recommendation to expire seven of the non-devolved provisions in the Act, 13 have already expired. He also pointed to alternative ways that some of these measures, if necessary, could be taken, and that is a very valuable suggestion. For example, I believe that in the Police, Crime, Sentencing and Courts Bill, which is before Parliament now, my colleagues are looking at some of the provisions on courts and keeping the remote working of courts going. So there are possible alternatives and he is right to draw attention to that.
Mr David Davis (Haltemprice and Howden) (Con)
The Secretary of State was not originally responsible for this. The issue that my right hon. Friend the Member for North Somerset (Dr Fox) raises was first raised on 23 March 2020 when we were first putting the Coronavirus Act into law. The point made at the time was that the Act is not necessary, because it replicates many other pieces of legislation, and that the Act alone allows the Government to act without recourse to the House, which is not true of the Civil Contingencies Act 2004 or the Public Health (Control of Disease) Act 1984. That is why it is wrong: because it does not have to come back to the House every time it takes away another piece of British freedom.
Sajid Javid
Like my right hon. Friend the Member for North Somerset (Dr Fox), my right hon. Friend the Member for Haltemprice and Howden (Mr Davis) makes an important point. He will understand that now that the Act is in place, it is important that the Government act promptly and quickly at any time when we can retire, expire or in some cases suspend measures in it; that there is regular scrutiny of the process; and that I and other Ministers come to the House whenever we can to expire its provisions or, if they are to continue, to justify them.
Mr Mark Harper (Forest of Dean) (Con)
Thank you, Madam Deputy Speaker. I will, of course, obey your strictures on time.
I welcome what the Secretary of State has done in not continuing with some of the most offensive and egregious provisions in the Act, particularly the one enabling almost indefinite detention. I have looked very carefully at the provisions that are being continued, and all the very unwelcome powers are not being continued. Although there remain some unwelcome powers with which I might quibble and although, as my right hon. Friend the Member for Haltemprice and Howden (Mr Davis) said, there are other ways of delivering some of them, the most offensive ones have been removed, which I welcome. I therefore will not seek to divide the House. If others were to do so, I will not oppose the renewal of these provisions.
It is worth saying, because many people outside the House do not understand this point, that it is not the Coronavirus Act 2020 but the Public Health (Control of Disease) Act 1984 that has been used to deliver the lockdown measures and the other measures that people have found so very difficult. The 1984 Act remains in place and gives Ministers all the powers they would want to be able to lock down the country again—I hope that is never needed, but they have the powers if they need them. I do not think that Act comes with sufficient scrutiny, which is why I strongly support the campaign of my hon. Friend the Member for Wycombe (Mr Baker) to reform it by better combining the necessary powers with the necessary parliamentary scrutiny.
On parliamentary scrutiny, I welcome what I detected was an improvement in the tone from the Opposition. I welcome what the shadow Secretary of State said; there was an increasing recognition that scrutiny and challenge to government is necessary. When some of my colleagues and I were challenging and opposing some of the Government measures that predate my right hon. Friend’s accession to the post of Secretary of State for Health and Social Care, it felt like a lonely occupation. We were not joined by the shadow Secretary of State or by many of his colleagues, so I am pleased that he is becoming more enamoured of the concept of scrutiny, which is very welcome for the Opposition.
Mr Davis
May I ask my right hon. Friend to hesitate in his laudatory comments about the Opposition Front Benchers? One problem we have is that we cannot amend the provisions. The deal they did not strike back on 23 March 2020, and that they should have, was that this should have been an amendable measure. We could then have put everything right.
Mr David Davis (Haltemprice and Howden) (Con)
I agree with every word of what the hon. Member for Brent Central (Dawn Butler) said. She made the point that we took the Bill through the House in one day and it was in fact unnecessary because the power was already replicated in the Civil Contingencies Act 2004 and the Public Health (Control of Disease) Act 1984. That was not just my opinion on 23 March—it was also reiterated by the Speaker’s Counsel, who actually wrote the Civil Contingencies Act, so that makes the point in terms.
Some improvements have been made in the proposal before us today, and that is good. However, as the hon. Lady said, we had forced quarantine, effectively house arrest, for the whole population; schools shuttered; cancelled elections; lone doctors being allowed to section people, an astonishing removal of civil liberties; families being unable to hold the hands of their loved ones; dog walkers in Derbyshire being embarrassed; and people being stopped because they had coffee on a walk in the park. This is not the sort of thing that is policing by consent in the United Kingdom. As she said, of 292 cases brought by the police, not one stood up—not one. That is an astonishing statistic, and we should remind ourselves every day this Act is in place that that is the case.
The other point, which the hon. Lady did not make much of but I think is important, is that of accountability. The point of bringing the Government back here—any Government, by the way, not just this Government—is to improve decision making; to make them make the right decisions. We have just had an astonishingly thorough report from two Select Committees that has pointed out that the Government have made mistake after mistake after mistake—mistakes that cost thousands of lives. The one that leaps out at me is the treatment of care homes, but that was only one part of it: there was also the triaging system. All of it led to thousands of lives being lost. Those mistakes might not have been made if the Government had to justify every element of their strategy throughout these past 575 days. What I said back on 23 March—that this was an unnecessary Bill—I believe still today. I agree that the way to do this is to rewrite the whole thing from scratch.
Covid-19 Update
David Davis Excerpts(3 years, 10 months ago)
Commons ChamberRead Full debate Read Hansard Text Watch Debate Read Debate Ministerial Extracts
Sajid Javid
I think the hon. Lady would agree that we are as a country in a much better place today with covid than we were even at the start of this year. That is down to many factors, and I referred to a number of those in my statement, but I believe that with the measures we have set out today, we can be confident that our children will not have to go again through the kind of disruption they have seen in the last couple of years.
Mr David Davis (Haltemprice and Howden) (Con)
The distinguishing characteristic of the emergency Coronavirus Act was not so much the new powers, which already existed in the Civil Contingencies Act 2014 and other Acts, but in the fact that Ministers were not required to get them approved by Parliament before implementation, which is one of the reasons for the poor quality of some of the decisions taken in the last year. Will the Secretary of State give an undertaking that any new regulations and indeed any regulations he retains will be put to the House before implementation, including vaccine certification if the Government are unwise enough to pursue that course?
Sajid Javid
I can tell my right hon. Friend that when the Government or any Government make decisions that have such an impact on people’s liberties, even if those decisions are made for all the right reasons—in this case, of course, to deal with this pandemic—they should be working with the House and working with colleagues. On any measures that are significant, of course the Government will come to the House and seek a vote of the House.
Use of Patient Data
David Davis Excerpts(4 years, 1 month ago)
Commons ChamberRead Full debate Read Hansard Text Watch Debate Read Debate Ministerial Extracts
Mr David Davis (Haltemprice and Howden) (Con)
In winding up the last debate, the Minister for the Armed Forces referred to volunteering a mucker for the guardroom. I hope that my entire speech does not sound like that to the Secretary of State; it is not intended to.
Every couple of years, Whitehall, like an overexcited teenager expecting a new mobile phone, becomes fixated with data. Most recently, it has been about the power of big data mining, and I am sure that that is not just because of the influence of Mr Dominic Cummings. The Department of Health and Social Care wants to open our GP medical records—55 million datasets or thereabouts—to pharmaceutical companies, universities and researchers.
Managed properly, that data could transform, innovate and help to overcome the great challenges of our time, such as cancer, dementia and diabetes. Those are proper and worthwhile ambitions in the national interest, and I have little doubt that that was the Government’s aim, but that data is incredibly personal, full of facts that might harm or embarrass the patient if they were leaked or misused. Psychiatric conditions, history of drug or alcohol abuse, sexually transmitted infections, pregnancy terminations—the list is extensive. Revealing that data may not be embarrassing for everyone, but it could be life-destroying for someone.
Unfortunately, in keeping with the Department’s long history of IT failures, the roll-out of the programme has been something of a shambles. The Government have failed to explain exactly how they will use the data, have failed to say who will use it and—most importantly—have failed to say how they will safeguard this treasure trove of information. They describe the data as “pseudonymised” because it is impossible to fully anonymise medical records, a fact that is well understood by experts in the field.
Even pseudonymised, anyone can be identified if someone tries hard enough. Take Tony Blair, who was widely known to have developed a heart condition, supraventricular tachycardia, in October 2003. He was first admitted to Stoke Mandeville and then rushed to Hammersmith. One year later, in September 2004, he visited Hammersmith again for a corrective operation. Even the name of the cardiologist is in the public record. A competent researcher would make very short work of finding such individual records in a mass database. That cannot be for the public good. Moreover, the Government seem to intend to keep hold of the keys to unlock the entire system and identify an individual if the state feels the need to do so.
Jim Shannon (Strangford) (DUP)
I congratulate the right hon. Gentleman on securing the debate; I have been inundated with the same concerns from many of my constituents. Does he agree that a system that allows a diversion from the court-appointed warrant to collect information is a dangerous precedent in terms of judicial due process? We must ensure that anyone who opts out is completely opted out, as is promised.
Mr Davis
I take the hon. Gentleman’s point and will elaborate on it as I make progress. As presented, the plan is to collect the data first and think about the problems second, but the information is too important and the Department’s record of failed IT is too great for it to be trusted with carte blanche over our privacy.
There is also the so-called honeypot problem. Data gathered centrally inevitably attracts actors with more nefarious intentions. The bigger the database, the greater the incentive to hack it. If the Pentagon, US Department of Defence and even Microsoft have been hacked by successful cyber-attacks, what chance does our NHS have?
Mr Deputy Speaker (Mr Nigel Evans)
Order. As we are coming towards 5 o’clock, I will just go through the following technical process.
Mr Davis
Thank you, Mr Deputy Speaker. I take it you do not want me to start from the beginning again. That might test people’s patience a little.
As I was saying, if the giants of data security can be hacked, what chance the NHS? Big databases and big systems are intrinsically vulnerable. In 2017, a ransomware attack brought parts of the NHS to its knees. Trusts were forced to turn away patients, ambulances were diverted and 20,000 operations were cancelled. That highlights significant problems the Government have not yet had time to address. Despite those problems, the Government have been determined to press ahead with their data plans regardless. They undertook no widespread consultation, provided no easy opt-out, and showed no particular willingness to listen as would be proper with such an important move. The public were given little over a month to opt out of a data grab that few knew existed. The plan was described by the British Medical Association as “a complete failure” and “completely inadequate”.
The Government’s riding roughshod over our privacy was halted only when a coalition of organisations, including digital rights campaign group Foxglove, the Doctors’ Association UK, the National Pensioners Convention and myself, challenged the legality of the state’s actions. Our letter before legal action and threat of injunction forced a delay of two months. That is a welcome pause, but it has not resolved the issue.
Earlier this week, the Secretary of State published a data strategy that raised the possibility of using health data to improve care, something I know is close to his heart, but plans for securing and handling our data were consigned to a single paragraph—almost an afterthought. If the Government do not take corrective action to address our concerns, there will inevitably be a full judicial review. I have no doubt that, without clear action to both protect privacy and give patients control of their own data, the Government will find themselves on the losing side of any legal case.
Today, I hope and believe the Government will have the courtesy to listen. Indeed, if I may, I will thank the Secretary of State for being here personally today. It is very unusual for a Secretary of State to take the time to be here—he must be the busiest man in the Government—and address the issue today. That he has done so is, I think, a compliment to him.
A comprehensive health database undoubtedly has the potential to revolutionise patient treatment and save hundreds of thousands of lives. However, this data grab is not the correct approach. There are much better, safer and more effective ways to do this in the national interest. No system is ever going to be 100% safe, but it must be as safe as possible. We must find the proper balance between privacy and progress, research and restrictions, individual rights and academic insights. That also means controlling the companies we allow into our health system. Patient trust is vital to our NHS, so foreign tech companies such as Palantir, with their history of supporting mass surveillance, assisting in drone strikes, immigration raids and predictive policing, must not be placed at the heart of our NHS. We should not be giving away our most sensitive medical information lightly under the guise of research to huge companies whose focus is profits over people.
Of course, this was not Whitehall’s first attempt at a medical data grab. The failed care.data programme was the most notorious attempt to invade our privacy. Launched in 2013, NHS Digital’s project aimed to extract data from GP surgeries into a central database and sell the information to third parties for profit. NHS Digital claimed the data was going to be anonymised, not realising that that was actually impossible. The Cabinet Office described the disaster as having
“major issues with project definition, schedule, budget, quality and/or benefits delivery, which at this stage do not appear to be manageable or resolvable.”
The project was ended in July 2016, wasting £8 million before it was scrapped.
However, care.data was just one example. I am afraid the Department has a long and problematic history with IT. Before care.data the NHS national programme for IT was launched by Labour in 2003. It sought to link more than 30,000 GPs to nearly 300 hospitals with a centralised medical records system for 50 million patients. The initial budget of £2.3 billion—note billion, not million—ballooned to £20 billion, which had to be written off when the programme collapsed in 2011. My old Committee, the Public Accounts Committee described the failed programme as one of the
“worst and most expensive contracting fiascos”
ever.
The possibilities to make research more productive, quicker and more secure are goals worth pursuing. There is no doubt that we all agree on the aims, but the path to progress must be agreed on, and there is clear concern among the public, GPs and professional bodies about this new data system.
Rachael Maskell (York Central) (Lab/Co-op)
I am very grateful to the right hon. Gentleman not only for giving way, but for leading today’s very important debate. It has been a really difficult year both for clinicians and for the public. The public understand the importance of research and planning, but they need confidence that their data—often about very intimate health needs—is secure. Given the need to maintain the special relationship between the clinician and patient, does he agree that the insufficiency of the current processes will damage that relationship, and therefore that we need a complete rethink about how data is collected and then used appropriately?
Mr Davis
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.