We Need a New Offence of Digital ID Theft

As part of the debates on the Data Protection Bill I recently advocated for a new Digital ID theft offence . This is what i said.

It strikes me as rather extraordinary that we do not have an identity theft offence. This is the Metropolitan Police guidance for the public:

“Your identity is one of your most valuable assets. If your identity is stolen, you can lose money and may find it difficult to get loans, credit cards or a mortgage. Your name, address and date of birth provide enough information to create another ‘you’”.

It could not be clearer. It goes on:

“An identity thief can use a number of methods to find out your personal information and will then use it to open bank accounts, take out credit cards and apply for state benefits in your name”.

It then talks about the signs that you should look out for, saying:

“There are a number of signs to look out for that may mean you are or may become a victim of identity theft … If you think you are a victim of identity theft or fraud, act quickly to ensure you are not liable for any financial losses … Contact CIFAS (the UK’s Fraud Prevention Service) to apply for protective registration”.

However, there is no criminal offence.

Interestingly enough, I mentioned this to the noble Baroness, Lady Morgan;  Back in October 2022, her committee—the Fraud Act 2006 and Digital Fraud Committee—produced a really good report, Fighting Fraud: Breaking the Chain, which said:

“Identity theft is often a predicate action to the criminal offence of fraud, as well as other offences including organised crime and terrorism, but it is not a criminal offence. Cifas datashows that cases of identity fraud increased by 22% in 2021, accounting for 63% of all cases recorded to Cifas’ National Fraud Database”.

It goes on to talk about identity theft to some good effect but states:

“In February 2022, the Government confirmed that there were no plans to introduce a new criminal offence of identity theft as ‘existing legislation is in place to protect people’s personal data and prosecute those that commit crimes enabled by identity theft’”.

I do not think the committee agreed with that at all. It said:

“The Government should consult on the introduction of legislation to create a specific criminal offence of identity theft. Alternatively, the Sentencing Council should consider including identity theft as a serious aggravating factor in cases of fraud”.

The Government are certainly at odds with the Select Committee chaired by the noble Baroness, Lady Morgan. I am indebted to a creative performer called Bennett Arron, who raised this with me some years ago. He related with some pain how he took months to get back his digital identity. He said: “I eventually, on my own, tracked down the thief and gave his name and address to the police. Nothing was done. One of the reasons the police did nothing was because they didn’t know how to charge him with what he had done to me”. That is not a good state of affairs. Then we heard from Paul Davis, the head of fraud prevention at TSB. The headline of the piece in the Sunday Times was: “I’m head of fraud at a bank and my identity was still stolen”. He is top dog in this area, and he has been the subject of identity theft.

This seems an extraordinary situation, whereby the Government are sitting on their hands. There is a clear issue with identity theft, yet they are refusing—they have gone into print, in response to the committee chaired by the noble Baroness, Lady Morgan—and saying, “No, no, we don’t need anything like that; everything is absolutely fine”. I hope that the Minister can give a better answer this time around.


Lords call for action on Digital Exclusion

The House of Lords recently debated the Report of the Communication and Digital Committee on Digital exclusion . This is an editred version of what I said when winding up the debate.

 

Trying to catch up with digital developments is a never-ending process, and the theme of many noble Lords today has been that the sheer pace of change means we have to be a great deal more active in what we are doing in terms of digital inclusion than we are being currently.

Access to data and digital devices affects every aspect of our lives, including our ability to learn and work; to connect with online public services; to access necessary services, from banking, to healthcare; and to socialise and connect with the people we know and love. For those with digital access, particularly in terms of services, this has been hugely positive- as access to the full benefits of state and society has never been more flexible or convenient if you have the right skills and the right connection.

However, a great number of our citizens cannot get take advantage of these digital benefits. They lack access to devices and broadband, and mobile connectivity is a major source of data poverty and digital exclusion. This proved to be a major issue during the Covid pandemic.  Of course the digital divide has not gone away subsequently—and it does not look as though it is going to any time soon.

There are new risks coming down the track, too, in the form of BT’s Digital Voice rollout. The Select Committee’s report highlighted the issues around digital exclusion. For example, it said that 1.7 million households had no broadband or mobile internet access in 2021; that 2.4 million adults were unable to complete a single basic task to get online; and that 5 million workers were likely to be acutely underskilled in basic skills by 2030. The Local Government Association’s report, The Role of Councils in Tackling Digital Exclusion, showed a very strong relationship between having fixed broadband and higher earnings and educational achievement, such as being able to work from home or for schoolwork.

To conflate two phrases that have been used today, this may be a Cinderella issue but “It’s the economy, stupid”. To borrow another phrase used by the noble Baroness, Lady Lane-Fox, we need to double down on what we are already doing. As the committee emphasised, we need an immediate improvement in government strategy and co-ordination. The Select Committee highlighted that the current digital inclusion strategy dates from 2014.  They called for a new strategy, despite the Government’s reluctance. We need a new framework with national-level guidance, resources and tools that support local digital inclusion initiatives.

The current strategy seems to be bedevilled by the fact that responsibility spans several government departments. It is not clear who—if anyone—at ministerial and senior officer level has responsibility for co-ordinating the Government’s approach. Lord Foster mentioned accountability, and Lady Harding, talked about clarity around leadership. Whatever it is, we need it.

Of course, in its report, the committee stressed the need to work with local authorities. A number of noble Lords have talked today about regional action, local delivery, street-level initiatives: whatever it is, again, it needs to be at that level. As part of a properly resourced national strategy, city and county councils and community organisations need to have a key role.

The Government too should play a key role, in building inclusive digital local economies. However, it is clear that there is very little strategic guidance to local councils from central government around tackling digital exclusion. As the committee also stresses, there is a very important role for competition in broadband rollout, especially in terms of giving assurance that investors in alternative providers to the incumbents get the reassurance that their investment is going on to a level playing field. I very much hope that the Minister will affirm the Government’s commitment to those alternative providers in terms of the delivery of the infrastructure in the communications industry.

Is it not high time that we upgraded the universal service obligation? The committee devoted some attention to this and many of us have argued for this ever since it was put into statutory form. It is a wholly inadequate floor. We all welcome the introduction of social tariffs for broadband, but the question of take-up needs addressing. The take-up is desperately low at 5%. We need some form of social tariff and data voucher auto-enrolment. The DWP should work with internet service providers to create an auto-enrolment scheme that includes one or both products as part of its universal credit package. Also, of course, we should lift VAT, as the committee recommended, and Ofcom should be empowered to regulate how and where companies advertise their social tariffs.

We also need to make sure that consumers are not driven into digital exclusion by mid-contract price rises. I would very much appreciate hearing from the Minister on where we are with government and Ofcom action on this.

The committee rightly places emphasis on digital skills, which many noble Lords have talked about. These are especially important in the age of AI. We need to take action on digital literacy. The UK has a vast digital literacy skills and knowledge gap. I will not quote Full Fact’s research, but all of us are aware of the digital literacy issues. Broader digital literacy is crucial if we are to ensure that we are in the driving seat, in particular where AI is concerned. There is much good that technology can do, but we must ensure that we know who has power over our children and what values are in play when that power is exercised. This is vital for the future of our children, the proper functioning of our society and the maintenance of public trust. Since media literacy is so closely linked to digital literacy, it would be useful to hear from the Minister where Ofcom is in terms of its new duties under the Online Safety Act.

We need to go further in terms of entitlement to a broader digital citizenship. Here I commend an earlier report of the committee, Free For All? Freedom of Expression in the Digital Age. It recommended that digital citizenship should be a central part of the Government’s media literacy strategy, with proper funding.  Digital education in schools should be embedded, covering both digital literacy and conduct online, aimed at promoting stability and inclusion and how that can be practised online. This should feature across subjects such as computing, PSHE and citizenship education, as recommended by the Royal Society for Public Health in its #StatusOfMind report as long ago as 2017.

Of course, we should always make sure that the Government provide an analogue alternative. We are talking about digital exclusion but, for those who are excluded and have the “fear factor”,  we need to make sure and not assume that all services can be delivered digitally.

Finally, we cannot expect the Government to do it all. We need to draw on and augment our community resources; I am a particular fan of the work of the Good Things Foundation See their info graphic accompanying this)  FutureDotNow, CILIP—the library and information association—and the Trussell Trust, and we have heard mention of the churches, which are really important elements of our local delivery. They need our support, and the Government’s, to carry on the brilliant work that they do.

 

 


We Can't Let this Disastrous Retained EU Law Bill go through in its current form

In the Lords we recently saw the arrival of the Retained EU (Law Revocation and Reform ) Bill. With its sunset clause threatening to phase out up to 4000 pieces of vital IP, environmental, consumer protection and product safety legislation on 31st December 2023 we need to drastically change or block it. This is what I said on second reading

 I hosted a meeting with Zsuzsanna Szelényi, the brave Hungarian former MP, a member of Fidesz and the author of Tainted Democracy: Viktor Orbán and the Subversion of Hungary. I reflected that this Bill, especially in the light of the reports from the DPRRC and the SLSC, is a government land grab of powers over Parliament, fully worthy of Viktor Orbán himself and his cronies. This is no less than an attempt to achieve a tawdry version of Singapore-on-Thames in the UK without proper democratic scrutiny, to the vast detriment of consumers, workers and creatives. It is no surprise that the Regulatory Policy Committee has stated that the Bill’s impact assessment is not fit for purpose.

It is not only important regulations that are being potentially swept away, but principles of interpretation and case law, built up over nearly 50 years of membership of the EU. This Government are knocking down the pillars of certainty of application of our laws. Lord Fox rightly quoted the Bar Council in this respect. Clause 5 would rip out the fundamental right to the protection of personal data from the UK GDPR and the Data Protection Act 2018. This is a direct threat to the UK’s data adequacy, with all the consequences that that entails. Is that really the Government’s intention?

As regards consumers, Which? has demonstrated the threat to basic food hygiene requirements for all types of food businesses: controls over meat safety, maximum pesticide levels, food additive regulations, controls over allergens in foods and requirements for baby foods. Product safety rights at risk include those affecting child safety and regulations surrounding transport safety. Civil aviation services could be sunsetted, along with airlines’ liability requirements in the event of airline accidents. Consumer rights on cancellation and information, protection against aggressive selling practices and redress for consumer law breaches across many sectors could all be impacted. Are any of these rights dispensable—mere parking tickets?

The TUC and many others have pointed out the employment rights that could be lost, and health and safety requirements too. Without so much as a by-your-leave, the Government could damage the employment conditions of every single employee in this country.

For creative workers in particular, the outlook as a result of this Bill is bleak. The impact of any change on the protection of part-time and fixed-term workers is particularly important for freelance workers in the creative industries. Fixed-term workers currently have the right to be treated no less favourably than a comparable permanent employee unless the employer can justify the different treatment. Are these rights dispensable? Are they mere parking tickets?

Then there is potentially the massive change to intellectual property rights, including CJEU case law on which rights holders rely. If these fall away, it creates huge uncertainty and incentive for litigation. The IP regulations and case law on the dashboard which could be sunsetted encompass a whole range, from databases, computer programs and performing rights to protections for medicines. At particular risk are artists’ resale rights, which give visual artists and their heirs a right to a royalty on secondary sales of the artist’s original works when sold on the art market. Visual artists are some of the lowest-earning creators, earning between £5,000 and £10,000 a year. Are these rights dispensable? Have the Government formed any view at all yet?

This Bill has created a fog of uncertainty over all these areas—a blank sheet of paper, per  Lord Beith; a giant question mark, per Lord Heseltine—and the impact could be disastrous. I hope this House ensures it does not see the light of day in its current form.


Crossparty work yet to do on the Online Safety Bill

Finally the Online Safety Bill has arrived in the House of Lords. This is what I said on winding up at the end of the debate which had 66 speakers in total, many of them making passionate and moving  speeches. We all want to see this go through, in particular to ensure that children and vulnerable adults are properly protected on social media, but there are still changes we want to see before it comes into law.

 

My Lords, I thank the Minister for his detailed introduction and his considerable engagement on the Bill to date. This has been a comprehensive, heartfelt and moving debate, with a great deal of cross-party agreement about how we must regulate social media going forward. With 66 speakers, however, I sadly will not be able to mention many significant contributors by name.

It has been a long and winding road to get to this point, as noble Lords have pointed out. As the Minister pointed out, along with a number of other noble Lords today, I sat on the Joint Committee which reported as far back as December 2021. I share the disappointment of many that we are not further along with the Bill. It is still a huge matter of regret that the Government chose not to implement Part 3 of the DEA in 2019. Not only, as mentioned by many, have we had a cavalcade of five Culture Secretaries, we have diverged a long way from the 2019 White Paper with its concept of the overarching duty of care. I share the regret that the Government have chosen to inflict last-minute radical surgery on the Bill to satisfy the, in my view, unjustified concerns of a very small number in their own party.

Ian Russell—I pay tribute to him, like other noble Lords—and the Samaritans are right that this is a major watering down of the Bill. Mr Russell showed us just this week how Molly had received thousands and thousands of posts, driven at her by the tech firms’ algorithms, which were harmful but would still be classed as legal. The noble Lord, Lord Russell, graphically described some of that material. As he said, if the regulator does not have powers around that content, there will be more tragedies like Molly’s.

The case for proper regulation of harms on social media was made eloquently to us in the Joint Committee by Ian and by witnesses such Edleen John of the FA and Frances Haugen, the Facebook whistleblower. The introduction to our report makes it clear that the key issue is the business model of the platforms, as described by the noble Lords, Lord Knight and Lord Mitchell, and the behaviour of their algorithms, which personalise and can amplify harmful content. A long line of reports by Select Committees and all-party groups have rightly concluded that regulation is absolutely necessary given the failure of the platforms even today to address these systemic issues. I am afraid I do not agree with the noble Baroness, Lady Bennett; being a digital native is absolutely no protection—if indeed there is such a thing as a digital native.

We will be examining the Bill and amendments proposed to it in a cross-party spirit of constructive criticism on these Benches. I hope the Government will respond likewise. The tests we will apply include: effective protections for children and vulnerable adults; transparency of systems and power for Ofcom to get to grips with the algorithms underlying them; that regulation is practical and privacy protecting; that online behaviour is treated on all fours with offline; and that there is a limitation of powers of the Secretary of State. We recognise the theme which has come through very strongly today: the importance of media literacy.

Given that there is, as a result of the changes to the Bill, increased emphasis on illegal content, we welcome the new offences, recommended in the main by the Law Commission, such as hate and communication crimes. We welcome Zach’s law, against sending flashing images or “epilepsy trolling”, as it is called, campaigned for by the Epilepsy Society, which is now in Clause 164 of the Bill. We welcome too the proposal to make an offence of encouraging self-harm. I hope that more is to come along the lines requested by my noble friend Lady Parminter.

There are many other forms of behaviour which are not and will not be illegal, and which may, according to terms of service, be entirely legal, but are in fact harmful. The terms of service of a platform acquire great importance as a result of these changes. Without “legal but harmful” regulation, platforms’ terms of service may not reflect the risks to adults on that service, and I was delighted to hear what the noble Baroness, Lady Stowell, had to say on this. That is why there must be a duty on platforms to undertake and publish risk and impact assessments on the outcomes of their terms of service and the use of their user empowerment tools, so that Ofcom can clearly evaluate the impact of their design and insist on changes or adherence to terms of service, issue revised codes or argue for more powers as necessary, for all the reasons set out by the noble Baroness, Lady Gohir, and my noble friend Lady Parminter.

The provisions around user empowerment tools have now become of the utmost importance as a result of these changes. However, as Carnegie, the Antisemitism Policy Trust, and many noble Lords today have said, these should be on by default to protect those suffering from poor mental health or who might lack faculty to turn them on.

Time is short today, so I can give only a snapshot of where else we on these Benches—and those on others, I hope—will be focusing in Committee. The current wording around “content of democratic importance” and “journalistic content” creates a lack of clarity for moderation processes. As recommended by the Joint Committee, these definitions should be replaced with a single statutory requirement to protect content where there are reasonable grounds to believe it will be in the public interest, as supported by the Equality and Human Rights Commission.

There has been a considerable amount of focus on children today, and there are a number of amendments that have clearly gained a huge amount of support around the House, and from the Children’s Charities’ Coalition on Internet Safety. They were so well articulated by the noble Baroness, Lady Kidron. I will not adumbrate them, but they include that children’s harms should be specified in the Bill, that we should include reference to the UN convention, and that there should be provisions to prevent online grooming. Particularly in the light of what we heard this week, we absolutely support those campaigning to ensure that the Bill provides for coroners to have access to children’s social media accounts after their deaths. We want to see Minister Scully’s promise to look at this translate into a firm government amendment.

We also need to expressly future-proof the Bill. It is not at all clear whether the Bill will be adequate to regulate and keep safe children in the metaverse. One has only to read the recent Institution of Engineering and Technology report, Safeguarding the Metaverse, and the report of the online CSA covert intelligence team, to realise that it is a real problem. We really need to make sure that we get the Bill right from this point of view.

As far as pornography is concerned, if we needed any more convincing of the issues surrounding children’s access to pornography, the recent research by the Children’s Commissioner, mentioned by several noble Lords, is the absolute clincher. It underlines the importance of the concerns of the coalition of charities, the noble Lord, Lord Bethell, and many other speakers today, who believe that the Online Safety Bill does not go far enough to prevent children accessing harmful pornographic content. We look forward to debating those amendments when they are put forward by the noble Lord, Lord Bethell.

We need to move swiftly on Part 5 in particular. The call to have a clear time limit to bring it in within six months of the Bill becoming law is an absolutely reasonable and essential demand.

We need to enshrine age-assurance principles in the Bill. The Minister is very well aware of issues relating to the Secretary of State’s powers. They have been mentioned by a number of noble Lords, and we need to get them right. Some can be mitigated by further and better parliamentary scrutiny, but many should simply be omitted from the Bill.

As has been mentioned by a number of noble Lords, there is huge regret around media literacy. We need to ensure that there is a whole-of-government approach to media literacy, with specific objectives set for not only Ofcom but the Government itself. I am sure that the noble Lord, Lord Stevenson, will be talking about an independent ombudsman.

End-to-end encryption has also come up; of course, that needs protecting. Clause 110 on the requirement by Ofcom to use accredited technology could lead to a requirement for continual surveillance. We need to correct that as well.

There is a lot in the Bill. We need to debate and tackle the issue of misinformation in due course, but this may not be the Bill for it. There are issues around what we know about the solutions to misinformation and disinformation and the operation of algorithmic amplification.

The code for violence against women and girls has been mentioned. I look forward to debating that and making sure that Ofcom has the power and the duty to produce a code which will protect women and girls against that kind of abuse online. We will no doubt consider criminal sanctions against senior managers as well. A Joint Committee, modelled on the Joint Committee on Human Rights, to ensure that the Bill is future-proofed along the lines that the noble Lords, Lord Inglewood and Lord Balfe, talked about is highly desirable.

The Minister was very clear in his opening remarks about what amendments he intends to table in Committee. I hope that he has others under consideration and that he will be in listening mode with regard to the changes that the House has said it wants to see today. Subject to getting the Bill in the right shape, these Benches are very keen to see early implementation of its provisions.

I hope that the Ofcom implementation road map will be revised, and that the Minister can say something about that. It is clearly the desire of noble Lords all around the House to improve the Bill, but we also want to see it safely through the House so that the long-delayed implementation can start.

This Bill is almost certainly not going to be the last word on the subject, as the noble Baroness, Lady Merron, very clearly said at the beginning of this debate, but it is a vital start. I am glad to say that today we have started in a very effective way.


Tackling the Harms in the Metaverse

I recentlty took part in a session entitled Regulation and Policing of Harm in the Metaverse as part of a Society for Computers and the Law and Queen Mary University of London policy forum on the metaverse alongside Benson Egwuonwu from DAC Beechcroft and Professor Julia Hornle Chair of Internet Law at the Centre for Commercial Law Studies at Queen Mary 

This is what i said in my introduction.

This is what two recent adverts from Meta said:

  • “In the metaverse farmers will optimize crop yields with real time data”
  • “In the metaverse students will learn astronomy by orbiting Saturn’s rings”

Both end with the message “The metaverse may be virtual but the impact is real”.

This is an important message but the first advert is a rather baffling use of the metaverse, the second could be quite exciting. Both adverts are designed to make us think about the opportunities presented by it.

But as we all know, alongside the opportunities there are always risks. It is very true of Artificial Intelligence, a subject I speak on regularly, but particularly as regards the metaverse.

The metaverse opens new forms and means of visualisation and communication but I don’t believe that there is yet a proper recognition that the metaverse in the form of immersive games which use avatars and metaverse chat rooms can cause harm or of  the potential extent of that harm.

I suspect this could be because although we now recognize that there are harms in the Online world,  the virtual world is even further away from reality and we again have a pattern repeating itself. At first we don’t recognize the potential harms that a new and developing technology such as this presents until confronted with the stark consequences.

The example of the tragic death of Molly Russell in relation to the understanding of harm on social media springs to mind

So in the face of that lack of recognition it’s really important to understand the nature of this potential harm, how can it be addressed and  prevent what might  become the normalisation of harm in the metaverse

 

The Sunday Times in a piece earlier this year on Metaverse Harms rather luridly headlined “My journey into the metaverse — already a home to sex predators”  asserted:   “....academics, VR experts and children’s charities say it is already a poorly regulated “Wild West” and “a tragedy waiting to happen” with legislation and safeguards woefully behind the technology. It is a place where adults and children, using their real voices, are able to mingle freely and chat, their headsets obscuring their activities from those around them.”

It went on: “Its immersive nature makes children particularly vulnerable, according to the National Society for the Prevention of Cruelty to Children (NSPCC) charity.”

This is supported by the Center for Countering Digital Hate’s  investigation last year into Facebook’s VR metaverse which  found children exposed to sexual content, bullying and threats of violence.

And there are other potential and actual harms too not involving children. Women and girls report being harassed and sexually assaulted, there is also fraudulent activity and racial abuse.

It is clear that because of the very nature of the metaverse- the impact of its hyper-realistic environment -there are specific and distinct harms the metaverse can cause that are different from other online platforms.

These include harms that may as yet be unquantified – which makes regulation difficult. There is insufficient knowledge and understanding about harms such as  the potentially addictive impact of the metaverse & other behavioural and cognitive effects it may have.

Policy and enforcement are made more difficult by fact that the metaverse is intended to allow real-time conversations. Inadequate data storage of activity on the metaverse could mean a lack of evidence to prove harm and the track of perpetrators but in turn this also raises conflicting privacy questions.

So What does the Online Safety Bill do?

It is important that metaverse is included within the platform responsibilities proposed by the bill. The Focus of the bill is about systems and risk assessment relating to  published content but metaverse platforms are about activity happening in real-time and we need to appreciate and deal with this difference. It also shows the importance of having a future proofing mechanism within the  bill but one that is not reliant on the decision of the Secretary of State for Culture Media and Sport.

There is the question whether the metaverse definition of regulated services currently falls within scope. This was raised by my colleagues in the Commons and ministerial reassurance was  given in relation to childrten but we have had two Ministerial changes since then!

Architects of the Bill such as CarnegieUK are optimistic that the metaverse – and the tech companies who create it  will not escape regulation in the UK because of the way that user generated content is defined in clause 50 and the reference there to “encountered”.

It is very likely that harms to children in the metaverse on these services will be caught.

As regards adults however  the OSB now very much focuses on harmful illegal content. Query whether it will or should capture analogous crimes within the metaverse so for instance is ‘virtual rape and sexual assault’ considered criminal in  the metaverse?

As regards content outside this, the current changes which have been announced to the bill which focus on Terms of Service rather than ‘legal but harmful’ create uncertainty.

It seems the idea is to give power to users to exclude other participants who are causing or threantening but how is this practical in the context of the virtual reality of the metaverse?

A better approach might be to clearly regulate to drive Safety by Design. Given the difficulties which will be encountered in policing and enforcement I believe  the emphasis needs to be placed on design of metaverse platforms and consider at the very outset how platform design contributes to harm or delivers safety.

Furthermore at present there is no proper independent complaints or redress mechanism such as an Ombudsman proposed for any of these platforms which in the view of many is a gaping hole in the governance of social media which includes the metaverse.

In a recent report The Center for Countering Digital Hate recorded 100 potential violations of Meta’s policies in 11 hours on Facebook’s VR chat . CCDH researchers found that users, including minors, are exposed to abusive behaviour every seven minutes. Yet the evidence is also that Meta is already unresponsive to reports of abuse. It seems that of those 100 potential violations, only 51 met Facebook’s criteria for reporting offending content, as the platform rejects reports if it cannot match them to a username in its database.

Well we are expecting the Bill in the Lords in the early New Year . We’ll see what we can do to improve it!

 

 


Freedom of Expression Compatible with Child Protection says Lord C-J

The House of Lords recently debated the report of the Communivccations and digitl Select Committee Repotry entitled Free For All? Freedom of Expression in the Digital Age.

This is an edited version of what I said in the debate.

 

 

 

 

 

 

 


At last... compensation for Hep C blood victims

Finally after 5 decades Haemophiliac victims of the contaminted Hepatitisis C blood scandal are due to receive compensation as a result of the recommendation of the Langstaff Enquiry ...although not their familes.

Something that successive governments of all parties have failed to do.

It reminds me that TWENTY YEARS AGO when I was the Lib Dem Health Spokesperson in the Lords we were arging for an enquiry and compensation from the Blair Government. Only now 2 decades later has it become a reality.

This is what I said at the time in a debate in April 2001 initiated by the late Lord Alf Morris, that great campaigner for the disabled, asking the government : "What further help they are considering for people who were infected with hepatitis C by contaminated National Health Service blood products and the dependants of those who have since died in consequence of their infection."

My Lords, I believe that the House should heartily thank the noble Lord, Lord Morris, for raising this issue yet again. It is unfortunate that I should have to congratulate the noble Lord on his dogged persistence in raising this issue time and time again. I can remember at least two previous debates this time last year and another in 1998. I remember innumerable Starred Questions on the subject, and yet the noble Lord must reiterate the same issues and points time and time again in debate. It is extremely disappointing that tonight we hold yet another debate to point out the problems faced by the haemophilia community as a result of the infected blood products with which the noble Lord has so cogently dealt tonight.

Many of us are only too well acquainted with the consequences of infected blood products which have affected over 4,000 people with haemophilia. We know that as a consequence up to 80 per cent of those infected will develop chronic liver disease; 25 per cent risk developing cirrhosis of the liver; and that between one and five per cent risk developing liver cancer. Those are appalling consequences.

Those who have hepatitis C have difficulty in obtaining life assurance. We know that they have reduced incomes as a result of giving up work, wholly or partially, and that they incur costs due to special dietary regimes that they must follow. We also know that the education of many young people who have been infected by these blood products has been adversely affected. The noble Lord, Lord Morris, was very eloquent in describing the discrimination faced by some of them at work, in school and in society, and their fears for the future. He referred to the lack of counselling support and the general inadequacy of support services for members of the haemophilia community who have been infected in this way.

There are three major, yet reasonable, demands made by the haemophilia community in its campaign for just treatment by the Government. To date, the

Department of Health appears to have resisted stoically all three demands. First, there is the lack of availability on a general basis of recombinant genetically-engineered blood products. Currently, they are available for all adults in Scotland and Wales but not in England and Northern Ireland. Do we have to see the emergence of a black market or cross-border trade in these recombinant products? Should not the Government make a positive commitment to provide these recombinant factor products for all adults in the United Kingdom wherever they live? Quite apart from that, what are the Government doing to ensure that the serious shortage of these products is overcome? In many ways that is as serious as the lack of universal availability. Those who are entitled to them find it difficult to get hold of them in the first place.

The second reasonable demand of the campaign is for adequate compensation. The contrast with the HIV/AIDS situation could not be more stark. The noble Lord, Lord Morris, referred to the setting up of the Macfarlane Trust which was given £90 million as a result of his campaigning in 1989. The trust has provided compensation to people with haemophilia who contracted HIV through contaminated blood products. But there is no equivalent provision for those who have contracted hepatitis C. The Government, in complete contrast to their stance on AIDS/HIV, have continued to reiterate that compensation will not be forthcoming. The Minister of State for Health, Mr Denham, said some time ago that at the end of the day the Government had concluded that haemophiliacs infected with hepatitis C should not receive special payments. On 29th March of this year the noble Lord, Lord Hunt, in response to a Starred Question tabled by the noble Lord, Lord Morris, said:

"The position is clear and has been stated policy by successive governments. It is that, in general, compensation is paid only where legal liability can be established. Compensation is therefore paid when it can be shown that a duty of care is owed by the NHS body; that there has been negligence; that there has been harm; and that the harm was caused by the negligence".—[Oficial Report, 29/3/01; col. 410.]

The Minister said something very similar on 26th March. This means that the Government have refused to regard a hepatitis C infection as a special case despite the way in which they have treated AIDS/HIV sufferers who, after all, were adjudged to be a special circumstance. These are very similar situations.

In our previous debate on this, noble Lords referred to the similarity between the viral infections. They are transmitted to haemophiliacs in exactly the same manner; they lead to debilitating illness, often followed by a lingering, painful death. I could consider at length the similarities between the two viral infections and the side effects; for example, those affected falling into the poverty trap. We have raised those matters in debate before and the Government are wholly aware of the similarities between the two infections.

The essence of the debate, and the reason for the anger in the haemophilia community, is the disparity in the treatment of haemophiliacs infected with HIV

and those who, in a sense, are even more unfortunate and have contracted hepatitis C. We now have the contrast with those who have a legal remedy, which was available as demonstrated in the case to which the noble Lord, Lord Morris, referred, and are covered by the Consumer Protection Act 1987. This latter case was in response to an action brought by 114 people who were infected with hepatitis by contaminated blood. The only difference between the cases that we are discussing today and the circumstances of those 114 people is the timing. Is it not serendipity that the Consumer Protection Act 1987 covers those 114 people but not those with haemophilia who are the subject of today's debate?

It is extraordinary that the Government—I have already quoted the noble Lord, Lord Hunt—take the view that it all depends on the strict legal position. Quite frankly, the issue is still a moral one, as we have debated in the past. In fact, the moral pressure should be increased when one is faced with the comparison with both that case and the HIV/AIDS compensation scheme. People with haemophilia live constantly with risk. We now have the risk of transmission of CJD/BSE. What will be the Government's attitude to that? Will they learn the lessons of the past? I hope that the Minister will give us a clear answer in that respect.

I turn to the third key demand of the campaign by the haemophilia community. Without even having had an inquiry, the NHS is asserting that no legal responsibility to people with haemophilia exists. The Government's position—that they will not provide compensation where the NHS is not at fault—falls down because that is precisely what the previous administration did in the case of those infected with HIV. An inquiry into how those with hepatitis C were infected would perhaps establish very similar circumstances.

Other countries such as France and Canada have held official inquiries. Why cannot we do the same in this country? The Government's refusal to instigate a public inquiry surely fails the morality test. Surely the sequence of events which led up to what has been widely referred to as one of the greatest tragedies in the history of the NHS needs to be examined with the utmost scrutiny. Why do the Government still refuse to set up an inquiry? Is it because they believe that if the inquiry reported it would demonstrate that the Government—the department—were at fault?

Doctors predict that the number of hepatitis C cases among both haemophiliacs and the general population is set to rise considerably over the next decade. The Department of Health should stop ignoring the plight of this group. They should start to treat it fairly and accede to its reasonable demands. The Government's attitude to date has been disappointing to say the least. This debate is another opportunity for them to redeem themselves.

 

 


Government must ensure the regulation of election dis-and misinformation

Earlier this year during the Elections Bill process we debated the regulation of digital campaigning and how we needed to add new provisions to allow the Elections Commission to control misinformation and disinformation 

This is what I said 

Digital campaigning is of growing importance. It accounted for 42.8% of reported spend on advertising in the UK at the 2017 general election. That figure rose in 2019; academic research has estimated that political parties’ spending on platforms is likely to have increased by over 50% in 2019 compared to 2017. As the Committee on Standards in Public Life said in its report in July last year, Regulating Election Finance:

“Research conducted by the Electoral Commission following the 2019 General Election revealed that concerns about transparency are having an impact on public trust and confidence in campaigns.”

In that light, the introduction of digital imprints for political electronic material is an overdue but welcome part of the Elections Bill.

The proposed regime as it stands covers all types of digital material and all types of appropriate promoter. However, a significant weakness of the Bill may exist in the detail of where an imprint must appear. In its current form, the Bill allows promoters of electronic material to avoid placing an imprint on the material itself if it is not reasonably practicable to do so. Instead, campaigners could include the imprint somewhere else that is directly accessible from the electronic material, such as a linked webpage or social media profile or bio. The evidence from Scotland’s recent parliamentary elections is that this will lead in practice to almost all imprints appearing on a promoter’s website or homepage or on their social media profile, rather than on the actual material itself. Perhaps that was encouraged by the rather permissive Electoral Commission guidance for those elections.

Can this really be classed as an imprint? For most observers of the material, there will be no discernible change from the situation that we have now—that is, they will not see the promoter’s details. The Electoral Commission also says that this approach could reduce transparency for voters if it is harder to find the imprint for some digital campaign material. It seems that

“if it is not reasonably practicable to comply”

will award promoters with too much leeway to hide an imprint. Replacing that with

“if it is not possible to comply”

would ensure that the majority of electronic material is within the scope of the Bill’s intentions. What happened to the original statement in the Cabinet Office summary of the final policy in its response to the consultation document Transparency in Digital Campaigning in June last year? That says:

“Under the new regime, all paid-for electronic material will require an imprint, regardless of who it is promoted by.”

There is no mention of exemptions.

The commission says it is important that the meanings of the terms in the Bill are clear and unambiguous, and that it needs to know what the Government’s intent is in this area. In what circumstances do the Government really believe it reasonable not to have an imprint but to have it on a website or on a social media profile? We need a clear statement from them.

As my noble friend Lord Wallace said, Amendments 194A and 196A really should be included in the “missed opportunity” box, given the massive threat of misinformation and disinformation during election campaigns, particularly by foreign actors, highlighted in a series of reports by the Electoral Commission, the Intelligence and Security Committee and the Committee on Standards in Public Life, as well as by the Joint Committee on the Draft Online Safety Bill, on which I sat. It is vital that we have much greater regulation over this and full transparency over what has been paid for and what content has been paid for. As the CSPL report last July said,

“digital communication allows for a more granular level of targeting and at a greater volume – meaning more messages are targeted, more precisely and more often.”

The report says:

“The evidence we have heard, combined with the conclusions reached by a range of expert reports on digital campaigning in recent years, has led us to conclude that urgent action is needed to require more information to be made available about how money is spent on digital campaigning.”

It continues in paragraph 6.26:

“We consider that social media companies that permit campaign adverts in the UK should be obliged to create advert libraries. As a minimum they should include adverts that fit the legal definition of election material in UK law.”

The report recommends that:

“The government should change the law to require parties and campaigners to provide the Electoral Commission with more detailed invoices from their digital suppliers … subdivide their spending returns to record what medium was used for each activity”

and

“legislate to require social media platforms that permit election adverts in the UK to create advert libraries that include specified information.”

All those recommendations are also contained in the Electoral Commission report, Digital Campaigning: Increasing Transparency for Voters from as long ago as June 2018, and reflect what the Centre for Data Ethics and Innovation set out in its February 2020 report on online targeting in specifying what it considered should be included in any such advert library. The implementation of these recommendations, which are included in Amendment 196A, would serve to greatly increase the financial transparency of digital campaigning operations.

In their response to the CSPL report, the Government said:

“The Government is committed to increasing transparency in digital campaigning to empower voters to make decisions. As part of this, we take these recommendations on digital campaigning seriously. As with all of the recommendations made by the CSPL, the Government will look in detail at the recommendations and consider the implications and practicalities.”

The Public Administration and Constitutional Affairs Committee report last December followed that up, saying at paragraph 216:

“The Government’s response to the CSPL report on electoral finance regulation provides no indication of which of its recommendations (not already included in the Bill) the Government is likely to adopt … prioritise for consultation or when or how the Government proposes to give legislative effect to recommendations that will not be included in the Bill. The Government should give clarity on its next steps in this regard.”

So the time has come for the Government to say what their intentions are. They have had over six months to do this, and I hope they have come to the conclusion that fully safeguards our democracy. I hope the Government will now see the merits and importance of those amendments.

The CSPL also recommended changes to electoral law regarding foreign actors. The CSPL says at paragraph 6.29 of its report:

“As we discuss in chapter 4, the rules on permissible donations were based on the principle that there should be no foreign interference in UK elections. However, the rules do not explicitly ban spending on campaign advertising by foreign individuals or organisations.”

It specifically refers to the Electoral Commission’s Digital Campaigning report, which said:

“A specific ban on any campaign spending from abroad would … strengthen the UK’s election and referendum rules.”

It quoted the DCMS committee’s February 2019 report, Disinformation and “Fake News”, which said that

“the UK is clearly vulnerable to covert digital influence campaigns”,

and the Intelligence and Security Committee report, which stated that if the commission

“is to tackle foreign interference, then it must be given the necessary legislative powers.”

These are powerful testimonies and recommendations from some very well respected committees. As a result, the CSPL recommended:

“In line with the principle of no foreign interference in UK elections, the government should legislate to ban foreign organisations or individuals from buying campaign advertising in the UK.”

This is very similar to a recommendation in the Electoral Commission’s Digital Campaigning: Increasing Transparency for Voters report of 2018, which I referred to earlier. In response, the Government said: “We are extending this”—the prohibition of foreign money—

“even further as part of the Elections Bill, to cover all third-party spending above £700 during a regulated period.”

However, the current proposals in the Bill have loopholes that foreign organisations can readily use, for instance through setting up multiple channels. A foreign actor could set up dozens of entities and spend £699 on each one—something very easy for online expenditure.

Amendment 194B would ensure that foreign entities were completely banned from participating at all and would make absolutely certain that the Government’s intentions were fulfilled. Again, I hope that the Minister will readily accept this amendment as strengthening the Bill against foreign interference.

Tackling societal harms caused by misinformation and disinformation is not straightforward, as our Joint Committee on the Online Safety Bill found. However, consistent with the report of the Lords Select Committee on Democracy and Digital Technologies, Digital Technology and the Resurrection of Trust, chaired by the much-missed Lord Puttnam, we said:

“Disinformation and Misinformation surrounding elections are a risk to democracy. Disinformation which aims to disrupt elections must be addressed by legislation. If the Government decides that the Online Safety Bill is not the appropriate place to do so, then it should use the Elections Bill which is currently making its way through Parliament.”

There is, of course, always a tension with freedom of expression, and as we emphasised in our Joint Committee, so we must prioritise tackling specific harmful activity over restricting content. Apart from the digital imprint provisions, however, the Bill fails to take any account of mounting evidence and concerns about the impact on our democracy of misinformation and disinformation. The long delayed report of the Intelligence and Security Committee on Russian interference of July 2020 was highly relevant in this context, stating:

“The UK is clearly a target for Russia’s disinformation campaigns and political influence operations and must therefore equip itself to counter such efforts.”

Protecting our democratic discourse and processes from hostile foreign interference is a central responsibility of the Government. The committee went on, very topically, to say:

“The links of the Russian elite to the UK—especially where this involves business and investment—provide access to UK companies and political figures, and thereby a means for broad Russian influence in the UK.”

It continued:

“We note—and, again, agree with the DCMS Select Committee—that ‘the UK is clearly vulnerable to covert digital influence campaigns.’”

The online harms White Paper published in April 2019 recognised the dangers that digital technology could pose to democracy and proposed measures to tackle them. Given the extensive regulatory framework being put in place for individual online harms in the Online Safety Bill, newly published last week, why are the Government reluctant to reaffirm the White Paper approach to elections and include it in this Bill? The Government responded to our Joint Committee report on this issue last week by saying that they agreed that misinformation and disinformation surrounding elections are a risk to democracy. However, they went on to say:

“The Government has robust systems in place that bring together governmental, civil society and private sector organisations to monitor and respond to interference in whatever form it takes to ensure that our democracy stays open, vibrant and transparent”

—fine words. They cite the Defending Democracy programme, saying:

“Ahead of major democratic events, the Defending Democracy programme stands up the Election Cell. This is a strategic coordination and risk reporting structure that works with relevant organisations to identify and respond to emerging issues”.

So far, so vague. They continue:

“The Counter Disinformation Unit based in DCMS is an integral part of this structure and undertakes work to understand the extent, scope and the reach of misinformation and disinformation.”

The Government, however, seem remarkably reluctant to tell us through parliamentary Questions or FoI requests what this Counter Disinformation Unit within the DCMS is. What does it actually do? Does it have a role during elections? Given that government response, it seems clear that the net result is that the Elections Bill has, and will have, no provisions relating to misinformation and disinformation.

Amendment 194B is a start and is designed to prevent one strand of disinformation, akin to the 640,000 Facebook posts that led to the Capitol riots of 6 January last year, which not only has immediate impact but erodes trust in future elections. The Government should pick this amendment up with enthusiasm but then introduce something much more comprehensive that meets the concerns of the ISC’s Russia report and tackles online misinformation and disinformation in election campaigns.

I would of course be very happy to discuss all these amendments and all the relevant issues with Ministers between Committee and Report stages.


We need to end the confusion and build public trust over health data

During recent debates  during the passage of the Health and Scare Bill I helped move amendmendments designed to end the confusion on the use and sharing of Health Data. The complications involved in using health data for public benefit and the lack of public engagement has led to a massive loss of trust. The transfer of health data responsibilities to NHS England from NHS Digital without proper consultation and the GP data opt out fiasco are a particular examples of how public trust can be lost. The review by Profressor Ben Goldacre has recognized this and I hope will lead to a much more comprehensive and clear framework for the protection and use of health data.

 

The first debate was on the subject of digital transformation of the health service generally

I start by warmly thanking the noble Lord, Lord Hunt of Kings Heath, for allowing me to speak to and lead on this set of amendments, to which his is the leading name. By the same token, I am delighted to see that he is now back in his place and able to advocate much more knowledgeably than I can the merits of the amendments in this group, which relate to the digital aspects of the NHS and the importance of digital transformation in the health service. They are designed to ensure that a digital transformation duty is set out, five-year plans are made, digital issues are high up on the agenda of the ICBs, and progress in this area is assessed and reported on.

I am sorry that I was not able to contribute at Second Reading on digital or data matters. However, as Chris Hopson, chief executive of NHS Providers, said in his Observer piece two Sundays ago,

“we need a national transformation programme that embeds modern technology, 21st century medicine, integrated care closer to home and much greater emphasis on prevention at the heart of our health and care system.”

There is huge potential for technology to help health and care professionals to communicate better and to enable people to access the care they need quickly and easily when it suits them. Quite apart from its impact on planning and administration, the technology, as the NHSE digital transformation website emphasises, goes all the way from ambulance iPads through fitness apps to digital home care technology. It ranges from websites and apps that make care and advice easy to access wherever you are to connected computer systems that give NHS staff the test results, history and evidence they need to make the best decisions for patients.

As the recent Wade-Gery report points out:

“Digital technology is transforming every industry including healthcare. Digital and data have been used to redesign services, raising citizen expectations about self-service, personalisation, and convenience, and increasing workforce productivity.”

It says that the NHS should be in the vanguard. It goes on to say:

“The pandemic has accelerated the shift to online and changed patient expectations and clinical willingness to adopt new ways of working.”

It also says that

“the vaccine programme, supported by so many brilliant volunteers and staff, was only possible through the use of advanced data analytics to drive the risk stratification, population segmentation and operational rollout.”

However, the review also says:

“The need is compelling. The NHS faces unprecedented demand and severe operational pressure as we emerge from the coronavirus pandemic, and we need new ways of working to address this. Now is the moment to put data, digital and technology at the heart of  how we transform health services … Effective implementation will require a significant cultural shift away from the current siloed approach in the centre with conscious management to ensure intentions translate to reality … This system leadership should be responsible, in a partnership model between the centre and ICSs, for setting out the business and technology capability requirements of ICSs and the centre with the roadmaps to realise these, and for determining the appropriate high level technical standards, and blueprints for transformed care pathways.”

I have quoted the Wade-Gery review at length but the What Good Looks Like framework set out by NHSX last year is an important document too, designed as it is to be used to accelerate digital and data transformation. It specifies in success measure 1:

“Your ICS has a clear strategy for digital transformation and collaboration. Leaders across the ICS collectively own and drive the digital transformation journey, placing citizens and frontline perspectives at the centre. All leaders promote digitally enabled transformation to efficiently deliver safe, high quality care. Integrated Care Boards (ICBs) build digital and data expertise and accountability into their leadership and governance arrangements, and ensure delivery of the system-wide digital and data strategy.”

Wade-Gery recommends, inter alia, that we

“reorientate the focus of the centre to make digital integral to transforming care”.

In the light of all this, surely that must apply to ICBs as well.

We need to adopt the measures set out in the amendments in this group; namely there should be a director of digital transformation for each ICB. ICBs need clear leadership to devise, develop and deliver the digital transformation that the NHS so badly needs, in line with all the above. There also needs to be a clear duty placed on ICBs to promote digital transformation. It must be included as part of their performance assessment—otherwise, none of this will happen—and in their annual report..

The resources for digital transformation need to be available. Capital  expenditure budgets for digital transformation must not  be raided for other purposes and digital transformation should take place as planned. It is clear from the Wade-Gery report that we should be doubling and lifting our NHS capital expenditure to 5% of total NHS expenditure, as recommended by the noble Lord, Lord Darzi, and the Institute for Public Policy Research back in June 2018. We should have done that by June 2022 to accord with his recommendations but we are still suffering from chronic underinvestment in digital technology. Indeed, what are the Government’s expenditure plans on NHS digital transformation? We should be ring-fencing the 5% as firmly as we can. As Wade-Gery says:

“NHSEI should therefore as a matter of urgency determine the levels of spend on IT across the wider system and seek to re-prioritise spend from within the wider NHSE budget to support accelerated digital transformation.”

It adds up to asking why these digital transformation aspirations have been put in place without willing the means.

I am also mindful of the other side of the coin of the adoption of digital transformation: there needs to be public information and engagement. 

Our amendments are designed to ensure the provision of information about the deployment of treatments and technology as part of ICBs’ patient involvement and patient choice duties. Without that kind of transparency, there will not be the patient and public trust in the NHS adoption of digital technology that is needed. Rightly, success measure 1 of the NHSX What Good Looks Like framework includes that an ICS should, inter alia,

“identify ICS-wide digital and data solutions for improving health and care outcomes by regularly engaging with partners, citizen and front line groups”.

Success measure 5, titled “Empower citizens”, says:

“What does good look like? Citizens are at the centre of service design and have access to a standard set of digital services that suit all literacy and digital inclusion needs. Citizens can access and contribute to their healthcare information, taking an active role in their health and well-being.”

So in the NHS’s view the engagement and provision of information about the deployment of new technologies is absolutely part of the delivery of a digital transformation strategy.

In essence, the amendments would enshrine what is already there in Wade-Gery and best practice guidance where it relates to digital technology and transformation. We should be making sure that our NHS legislation is fully updated in line with that report and with the guidance on what success looks like for the digital age. I hope the Minister agrees to take the amendments on board, and I look forward to hearing his reply.

The second two committee debates were specifically on health data

These amendments relate to the abolition of the Health and Social Care Information Centre and the implications for the integrity of patient data. Clauses 88 and 89 give the Secretary of State powers through regulations to transfer a function from one relevant body to another, and the relevant bodies are defined as Health Education England, the Health and Social Care Information Centre, the Health Research Authority, the Human Fertilisation and Embryology Authority, the Human Tissue Authority and NHS England. Other than NHS England, each of those bodies can be abolished under the clause as the result of a transfer of functions.

 Clause 88 provides for the abolition of the Health and Social Care Information Centre. The Government have announced that they will be using the powers in that clause to merge NHS Digital to form part of the new transformation directorate within NHSE, and of course we have seen that NHSX has now been abolished and the relevant personnel have moved into the transformation directorate. The Health and Social Care Information Centre is an executive non-departmental public body created by statute, usually known by the term “NHS Digital”. This amendment, which would prevent that from happening to the HSCIC, is designed to ensure that NHS Digital continues as an entity to safeguard patient data. The merger of NHS Digital with NHSE risks losing the skills and experience that currently sit within NHS Digital. I have mentioned that NHSX has ceased to exist.

There are two risks for patients. One is that important knowledge and skills will be lost as talented people leave the organisation and time is devoted to the nuts and bolts of making the organisation function rather than on achieving its aims. The other is that the new merged organisation will just be too big and unwieldy to respond in an agile way to major challenges such as workforce planning and digital innovation. If NHSE leaders understand how important these challenges are then they will be able to prioritise them and make them part of the organisation’s core function.

I turn to the functions of the statutory safe havens in relation to Clause 89. Part 9 in Chapter 2 of the Health and Social Care Act 2012 lays out the functions and obligations of what is described as the statutory safe haven for patient data from across the health and social care system required for the production of national statistics and for commissioning, regulatory and research purposes, in addition to supporting patient care. Amendment 228 seeks to keep these statutory protections in place and ensure that NHS England does not take on that responsibility, because of a potential conflict of interest in its role.

The bottom line is that we need to retain NHS Digital’s statutory safe haven functions separate from NHS England. As the BMA has said, it is of the utmost importance to retain a quasi-autonomous body for the purposes of collecting, storing and distributing sensitive patient data—something that would be lost under a merger of NHSD and NHSE.

There is one other major advantage of keeping NHS Digital as the digital safe haven. The statutory safe haven’s legal name is the Health and Social Care Information Centre, so there is some obligation to social care. NHSD has always given some thought to integration, even when there was very little on the social care side to integrate with, and little interest from NHSE in doing that work itself. If it all gets merged into NHSE then how will the obligation to collect social care data continue to exist, since NHSE’s responsibility is to the NHS? If this transfer of functions takes place, who will be responsible for the national collection of social care data? Each bit of the social care world will see NHSE as a different entity from NHS Digital. What are the Government’s joining-up plans in respect of the future governance of this kind of data? I beg to move.

I take this opportunity to come back to the Minister to add a query about the data governance regime which he has described this evening and into which we dipped our toe with the last group of amendments. My noble friend anticipated me in discussing the White Paper, which, in turn, follows from the Data Saves Lives draft strategy. I hope we will have the opportunity to meet the Minister to discuss this further because it is a very complex area.

I want to add to that conversation the fact that we variously have IGARD, CAG and the National Data Guardian for Health and Care—as well as NHS Digital, which we hope will remain separate, but we will come to that shortly. We have all these different bodies, but we need a simple regime which helps us understand, for instance, whether the Minister will say, “Yes, it’s already happening”, to the noble Baroness, Lady McIntosh, or, “No, it’s not going to happen.” I could not tell you the answer to that question in my current state of knowledge about the ability to transfer information across the health service and internationally.

There is a balance to be struck between the established protections and new provisions which might expedite the development of access to new and improved treatments and technologies—but it must be done in a safe way. I hope that, between Committee and Report, the Minister will take the opportunity to ensure that we have all the information we need on plans to perform a so-called reset of or new direction for—or however he might like to describe it—the NHS’s use of our health data.

At Report Stage we made some progress 

The Minister in his letter—which the noble Lord, Lord Hunt, addressed in his response—seemed a bit affronted that we should raise the credentials of NHSEI as a holder and protector of NHS data. I would refer to the BMJ letter, which I think came online yesterday, from Kingsley Manning, a former chair of NHS Digital. He really does set it all out. I shall not go into great detail but, for instance, he says that merging NHS Digital with NHSE

“is an important and retrograde step.”

Your Lordships may dispute this, but from where he sat this is important. He said:

“In my experience the general approach of NHS England, including of its clinicians, was that much of the guidance and regulations with respect to the use of patient” data “was seen as unnecessary”. That is a pretty big statement and a fairly damning verdict from the former chair of NHS Digital. I do not think that the Minister can simply remedy the situation by assurances, so I support the amendment in the name of the noble Lord, Lord Hunt, and if it is put to a vote, I very much hope that the House will support it.

Finally, whether or not these amendments are pressed, I hope that the Minister will reconsider whether the Goldacre review should be published before the final version of the new NHS data strategy, Data Saves Lives. I welcome the fact that the Goldacre review is going to deal with information governance, but it is important that we should see that before the final version of Data Saves Lives.

Later when the Bill came back to the Lords but before the Golacre review was published I acknowledged that the Government had promised action 

My Lords, briefly, I support the remarks of the noble Lord, Lord Hunt, regarding Motions F and F1. He, assisted by my noble friend Lady Brinton and I, has pursued the question of the future of data governance in the NHS with great determination and persistence. I pay tribute to him and to medConfidential in that respect. I know that the Minister, the noble Lord, Lord Kamall, is equally determined to make sure that data governance in the new structures is designed to secure public trust. I very much hope that he will give the assurances sought by the noble Lord, Lord Hunt.

The key problem we identified early on was the conflict of interest referred to by the noble Lord, Lord Hunt, with NHS England in effect marking its own homework, and those who have data governance responsibility reporting directly to senior managers within the digital transformation directorate. I hope that the assurances to be given by the Minister will set out a clear set of governance duties on transparency of oversight, particularly where NHS England is exercising its own statutory powers internally. I look forward to what the Minister has to say

 


Lord C-J : Marking International Women's Day and the Need for Free Speech