Covid-19: Information Sharing with Police Forces

Baroness Lane-Fox of Soho Excerpts

Tuesday 20th October 2020 Lords Chamber

[Baroness Lane-Fox of Soho (CB) [V]]

Understandably, this news has caused much confusion: you only need to take to social media to see people’s anxieties. As I understand it, the app keeps all data locally on your phone and only when you upload a positive test does it then become more widely available, although anonymised. What measures are the Government going to take to make sure that communications are crystal clear, so that people can totally understand the privacy implications of what they are doing? It seems there is still much anxiety about exactly what can be done.

[Lord Bethell (Con)]

I am grateful to the noble Baroness for her insight, but I reassure her that the information on the app is not covered by this memorandum of understanding. That is a principle that has been made very clear by the NHS app. This is the data held on CTAS, the Public Health England database, and it remains the property of Public Health England; the MoU is very specific about that. As the noble Baroness is aware, the app is a distributed source of information; it has extremely high privacy barriers, and this MoU does not in any way breach those barriers.

Covid-19: Contact-tracing App

Baroness Lane-Fox of Soho Excerpts

Wednesday 6th May 2020 Lords Chamber

[Lord Bethell]

My noble friend Lord O’Shaughnessy is entirely right. We all wish to move as quickly as possible back to normal, but I am afraid that travel will be one of the aspects of our former lives that will be slowest to return. That said, we are working extremely hard with other countries to make sure that interoperability can be baked into our arrangements. Of course, the app has not yet been launched and few other countries are ahead of us. We sat with the Irish Government on 24 April in order to work out interoperability protocols since that border is the most important and proximate to us.

[Baroness Lane-Fox of Soho (CB)]

The Office for National Statistics tells us that the highest number of deaths is among the poorest communities at 55 in 100,000 versus 25 in 100,000 in other communities, yet they are also the most digitally excluded people. It is tragic that these inequalities mean that the contact-tracing app will not help those who most need it. What is the Government’s plan to address this enormous challenge?

[Lord Bethell]

The noble Baroness is entirely right to point to the importance of ensuring that the vulnerable are included. Of course, the app is not the only thing we are depending on. Manual track and trace in the conventional way of using a telephone and speaking to those who test positive will still be a core part of our track-and-trace arrangements. Efforts will be made to reach those who are vulnerable or digitally isolated to ensure that they have details of the provisions for these track-and-trace arrangements.

People with Learning Disabilities

Baroness Lane-Fox of Soho Excerpts

Thursday 6th June 2019 Lords Chamber

[Baroness Lane-Fox of Soho (CB)]

My Lords, I thank the noble Baroness, Lady Thornton, and I am delighted to follow the noble Lord, Lord Hunt. I pick up two words that both of them used in their remarks. The noble Baroness talked about the “outdated” system and the noble Lord about the need for a completely “new” service. As someone who comes from the world of innovation and new service design, I would like to talk about how very deeply I believe that better use of technology can help both people in communities and those who need to be in a hospital environment.

The potential for technology in this arena is breath-taking. I have seen examples of people with severe mental health challenges using virtual reality technologies to conquer profound issues of schizophrenia and learn how to interact with people who they were unable to share a room with before. Mencap did a fantastic study with people who had extreme mental health challenges, helping them to see what it was like to walk down the street. One incarnation of that was to go into a voting booth, so that they did not feel overwhelmed by that environment. These are not complicated technologies and they are available now. They can help people to live lives that all of us take for granted, if we are not faced with such challenges.

I argue that there is a lack of leadership, but also that we should not just use technology for technology’s sake. We need to use technology hand-in-hand with human solutions, led by the users of these services. I am a proud patron of AbilityNet, which provides assisted technology to people with both physical and mental challenges. One thing it does is provide volunteers to help people with the technology that is already available to them in their homes. The examples of people’s lives being made considerably better with a relatively small amount of free help are quite remarkable. We should bear in mind that this is a very small charity with a small network of volunteers, yet it has a huge impact on the constituents it serves.

I met a woman who had pretty much no contact with any of her family around the world. She was extremely isolated. She had been given, as often happens, a bunch of expensive kit by somebody, but it sat in the corner and she was actively frightened of using it. An AbilityNet volunteer came to show her how to turn on the computer, how not to be frightened of it, how to make sure that she was in charge of it and not the other way round, and to assure her that it would not listen to everything that she said—I hope that that was true. She could then connect to the worlds that she wanted to be connected to. She had family in Canada, and the technology prevented her needing extra support in the week because she was able to do a little more for herself. Everyone was a winner. Local services had less hassle to get to her every day because she was able to have that point of connection with someone from her family in another country.

I also met a wonderful man who was completely blind and who had been given a piece of assisted technology that he was frightened of. Again, with a relatively small amount of volunteering help, he was able to run his business using that technology.

I am not a complete Utopian: technology will not solve the profoundly disturbing cases that the noble Baroness, Lady Thornton, so articulately described. But if we are to reimagine a service fit for purpose in 2019—not 1819, as some of these horror stories suggest—we have to think about technology at the heart of how we design solutions. We should not make them only digital, but they must be able to help people run their lives by making use of the amazing ability that we now have in 2019.

I am also chancellor of the Open University. As many noble Lords will know, we have one of the largest constituent groups of disabled learners in the country. That is partly because of the OU’s long history of adaptive technologies and assisted technologies, and the extremely competent team of people who build brilliant learning technologies for people with complex needs. I am often in tears as I stand on the stage during degree ceremonies, when I meet people who put us all to shame. They have not only faced massive learning difficulties, both mental and physical, but may have suffered a bereavement, may not have a carer or may have been working a job at the same time—hard to believe, but true—and have completed a degree. I give thanks for the Open University and its incredibly robust network and systems that provide an outlet for people who want to continue with their education, at whatever stage of their lives. I urge the Government to think about how to reinforce those institutions—the big ones such as the Open University and the small ones such as AbilityNet—that do a very valuable job in communities. They must be a core part of how we reimagine services in the future.

We should not, however, overcomplicate some of the needs if we are designing a service from scratch. In my mind, it comes down to three important things: good infrastructure, good skills and investment. Good infrastructure is often overlooked. I did some work for Jeremy Hunt when he was Secretary of State for Health, looking at innovation in the NHS. I do not think that he was very pleased with me when I suggested that the biggest innovation would be to provide high-quality wi-fi across all of the estate. Thankfully, that is happening, but not quickly enough. Good quality wi-fi really does transform patients’, carers’ and staff’s experience of technology in hospitals—think how our own lives were transformed in this Chamber when it was no longer a patchy reality for us here.

Secondly, many noble Lords will know that I have long worked on the issue of skills, but far too many people are still not given access to training and skills at whatever point in their lives. It is not just the person who suffers but their carers and the people looking after them. When I spent far too long in hospital, many of the nurses and doctors had no idea about technology. They were given no training or education on how to use it. How are we expected to equip ourselves for the modern age if we do not know how to use the stuff that is available to us? Skills is a very important piece of the puzzle.

Finally, on investment, I am often ashamed when I look at the venture capital commitments from the sectors that I am lucky enough to work in. Too little money goes to inclusive technologies and creative use of technology for people who are perhaps the hardest to reach in our communities. It is imperative that we demand more of the sector, and that the Government lead and show examples of what is possible. Let us not forget that the touch screen was only invented for people who had difficulty moving their hands, and many other amazing inventions came about because of the needs of some of the furthest to reach in society. I believe very deeply that if you build for the furthest, you actually do a great service for the vast majority of people. These are not people on the outlying extremes of our society; they can help us learn more about ourselves as well. It is fundamental to inclusive design, and we need more investment from the sector. There are good examples in London of people who are trying to put investment in. Atomico Angels is a small fund that has been set up, and some great stuff is happening with LocalGlobe, Zinc and others, but it is not enough. The scale is dwarfed compared with what is going into other parts of the technology sector and compared with where it should be.

I end by painting a picture of a happy place. We started with the noble Baroness, Lady Thornton, describing some very broken places, but I am lucky enough to know Dame Stephanie Shirley, an amazing technology entrepreneur from the late 1960s and 1970s, who has spent the later part of her career as an extraordinary philanthropist. She had a child who died of an extremely serious form of autism, and she has built a school, Prior’s Court, for children who suffer from this very severe autism, many of whom cannot speak or look after themselves. If anyone needs an example of how we can design for the future, I urge them to visit Prior’s Court. It should be upheld by the Government as an example of what is possible. She has robots talking to the children, because sometimes it is easier for them to communicate with something that does not have all the complicated cues that we have on our faces, and she has art and screens. It is not a technology-led place: it just embeds the best of technology. I salute Prior’s Court. Let us forget the past of Winterbourne Abbas and use Prior’s Court as an example of the future.

NHS: Equitable Access

Baroness Lane-Fox of Soho Excerpts

Thursday 5th July 2018 Lords Chamber

[Lord O'Shaughnessy]

I am sorry that the noble Baroness has not started singing; I am sure that we would have all joined in. As she rightly said, the NHS carried out the first major public vaccination programme in the world. We have always led the world in vaccination programmes. As she said, prophylaxis has been deemed to be successful; I will need to write to her on the specifics of the rollout. On the HPV vaccine and its availability for boys, we are still waiting for the final recommendations of the joint committee on vaccinations. We will act on those as soon as we get them.

[Baroness Lane-Fox of Soho (CB)]

My Lords, despite starting a chain of karaoke bars, I will also not sing. The noble Baroness, Lady Thornton, is right to talk about the advances but there are also some fundamentals to improving patient care. Two years ago, I made some recommendations to the Secretary of State about basic digital skills for NHS staff and free wi-fi in hospitals, which we decided would be the most important building blocks to dramatically improve things for those working in the NHS and people in the system. Can the Minister update us on the progress of those recommendations?

[Lord O’Shaughnessy]

The noble Baroness made some fantastic recommendations, which we have adopted. I mentioned the Topol review of skills, which will make sure that clinical skills are there to adopt technology. It is expected that all GP practices and secondary care trusts will offer free wi-fi by the end of this year.

End of Life Care

Baroness Lane-Fox of Soho Excerpts

Tuesday 14th March 2017 Lords Chamber

[Baroness Lane-Fox of Soho (CB)]

My Lords, I too pay tribute to the noble Baroness, Lady Finlay, and I look forward to some exciting debates about digital and dying matters.

Doteveryone, the charity that I founded to make the internet work for everyone, spent six months last year looking at how technology can help improve the care of people with life-limiting conditions. Even in the complexity that inevitably plagues the end of life, dramatic improvements can be made to people’s lives through relatively simple use of digital, thereby—to answer the challenge from the noble Lord, Lord Judd—allowing for more time to live and more time for human care.

I shall share three of Doteveryone’s recommendations. First, on the problem of NHS legacy technology, as many noble Lords will know, each trust is supported by hundreds of systems. On average, each hospital has over 600 IT systems that may or may not usefully speak to each other. Much communication still relies on fax, and a small number of big suppliers dominate essential services such as booking appointments. So the gap between innovation and legacy continues to grow, leaving patients and professionals to work with technology that is not fit for purpose.

Resourceful people, however, always find ways round these problems. Doctors message each other using WhatsApp, and I have found hundreds of people who have commissioned apps to solve small bits of the clinical problems. Doteveryone’s research has shown that carers and people with multiple long-term conditions therefore become full-time administrators, supporting the NHS with unpaid work to manage these information flows, appointment bookings and all the other things that follow from bad IT. This is entirely to the detriment of healthcare outcomes. The burden falls disproportionately on those who can least afford it.

Doteveryone built a prototype for a collaborative healthcare record that allows people, carers and clinicians to see the same data and information. This was not a tortuous project: it was a quick, responsive and cheap one based on hundreds of research interviews with people at home and in care homes, hospices and hospitals. There are, however, not enough of these ideas and services out there, and not enough that are being allowed to scale through the system.

As one person we met—Joe, who is living with severe heart conditions—told us:

“I panic when I am listening to doctors and I don’t hear it all … I need a better way to record our conversations or make sure I always have someone with me”.


There can always be someone with you: they just do not always have to be a person.

Our second recommendation was around wi-fi. We need beautifully designed wi-fi in care homes. I use that word “beautiful” carefully. Some 70% of care homes have no wi-fi at all; and 80% of people living in care homes say that they are scared to leave their room. How brilliant would it be if by having better wi-fi across the estate, they could chat to someone just down the corridor, or even better perhaps, back home or even in another country? Sometimes, simple tech solutions can provide imaginative leaps for problems that people are not seeing.

The overarching point of all this is that there is so much opportunity to implement technology that enables people facing the most difficult of times with more hope, more joy and, crucially, more time. Infrastructure and services are vital, but so is experience, imagination and skills within the system.

The third recommendation we made is that we must make digital skills a priority or we will have no chance of meeting the mammoth social challenge we face. This is not about learning to code but about a digital understanding that enables you to make better decisions.

I was at my grandmother’s funeral yesterday. She was lucky: she lived until 96 with plenty of family and support around her. But even she faced 12 months of hideous loneliness when my grandfather died. Despite being able to stay in her own home until the last few weeks, she was desperately unhappy in the very well-run local care home she moved into. Along with quantities of cheese, the only thing she took pleasure in was seeing videos of her grandchildren and great-grandchildren on my iPad. We recorded messages from her and to her, and her face would light up. This is not a complex technical solution or a crazy innovation. It is a humane and obvious use of digital.

I urge the Minister to look at older people with multiple conditions as superusers of the NHS. Improving service delivery for them at the end of life will lay the foundations of an improved service for everyone. End-of-life care is not a specialist clinical issue but a building block for a better NHS.

Mental Health: Young People

Baroness Lane-Fox of Soho Excerpts

Thursday 9th February 2017 Grand Committee

[Baroness Lane-Fox of Soho (CB)]

My Lords, I too thank the noble Baroness, Lady Massey, for her leadership on this issue.

There is no greater advocate for the change that the internet has enabled than me. I see its benefits on a daily basis and have worked my whole working life within the sector. However, even I do not believe that we have yet understood, and developed the frameworks to help our children deal with, both the benefits and the destruction of this incredible revolution.

There is so much to be positive about. I see my nephews playing multiplayer games and building incredible things, connected to children they have never met before across the world. I see my godchildren playing chess in complicated ways with players they have never seen before in countries all over the world. However, it is hard to ignore some of the data and studies that also show how this technology is affecting children in a negative way. The BBC says that 62% of children on its websites are looking for mental health-related data. I look at this issue from a different angle: the number of children who are using some of the networks that were never intended for them. I declare an interest as a director of Twitter. Although we do not have so many children on our network, Facebook says that 52% of eight year-olds sign up to Facebook, despite an age limit of 14. I am not against social networks—quite the opposite—but there are reasons why they are age-appropriate.

The positives of this amazing technology must be countered by an understanding from parents and teachers about what their children are really doing. I had a small absence from your Lordships’ House as I now have seven-month-old identical twin boys, and this issue is front and centre as they see me with my iPhone or my iPad—probably too much—and immediately their faces turn towards it. I find this world hard to navigate; how it must be if you are living in one of the 1 million families in this country who do not have basic digital skills, I dread to think, let alone if you are a teacher who may themselves be struggling with understanding this complex new world, yet you are responsible for a class of children who may be at varying degrees of usage and attention in the classroom.

I feel strongly that we must create new ways of thinking about this problem. It starts with schools but it must also be led by parents. I pay tribute to my noble friend Lady Kidron who has done a lot of work on children and their rights, but we need to go further. I am keen to understand how we could use more creative thinking and I urge the Minister to consider this. Some amazing people around the world are looking at the issue, and I cite Danah Boyd, who is based at Stanford, as a world-leading expert. I would love to see how parents can be given comfort and reassurance in these uncertain times so as to make sure that the benefits continue to outweigh some of the dangers.

Health

Baroness Lane-Fox of Soho Excerpts

Thursday 26th November 2015 Lords Chamber

[Baroness Lane-Fox of Soho (CB)]

My Lords, I, too, thank the noble Lord for securing this debate. I was reflecting on whether he is happy or sad that he no longer runs the great NHS, for it seems to me that in many ways there has been no greater time of excitement, with innovations and improvements. At the same time—my goodness me—we need them more than ever. Perhaps the greatest of those innovations and improvements is the internet. I would call it the organising principle of our age, yet there is by no means the same organisation around it in our health service.

You can perhaps keep on your phone in your pocket as much health information as your GP has about you—perhaps even more. When I describe the House of Lords to people outside it, I often put some of the longevity in this Chamber down to the fact that noble Lords walk around so much along the endless corridors. I would love to be able to give all noble Lords a Jawbone UP or other device to wear around their wrists to test my philosophy. I have—although I do not have it with me today—a bracelet that nudges me every now and then to help my nerves by moving and wriggling. There are endless devices, of which I am sure some noble Lords are aware, that help people to read practically every single vital life sign. This is an exciting time: it can only be a good thing to have more information, not less.

I have worked with two small UK companies. One, called Sleepio, is helping to address the enormous challenge of insomnia. It has an app—a device that it uses to help people talk about their health after having had a bad night’s sleep, and to give tips about how to get a better one. There has been a more than 50% improvement in people’s sleep, and a 100% improvement in respect of the number of sleep drugs people are taking. Another small company, HealthUnlocked, helps people to find patient groups with diseases like their own. One of its most important and useful groups is concerned with diabetes. The people using it say that they have experienced an improvement in quality of life with the disease of some 60%, and a 30% reduction in the number of drugs they use. These are profound and important shifts, all enabled by the internet.

However, I must wave two enormous red banners about the huge risks that I see coming over the horizon. The first is one that I mention not out of any parochialism or jingoism: we would be mistaken to think that it is not a very small area of a very small bit of the west coast of America that is likely to dominate the health creation of the future. Google, Facebook and the other big US platforms have designs on our health. Google, even in its failed attempt to build health records, took 30 million individuals’ health records in a very short space of time. This is an enormous issue that we need to debate and think about much more carefully. The force for good is hugely powerful, but the possibility that our enormously valuable NHS will lose ground to these incredibly well-invested organisations, which understand technology at their very core, is real. If we are to have a truly health-creating society, deploying all the tools in our armoury, we must think very carefully about enabling the NHS to “compete”—in the right way—with some of these giants. For me, the potential access to the data that our great NHS has, and the inclusivity and universality of those data, is one of our greatest weapons, but it would be a mistake to imagine that we are anywhere near that right now.

My second red flag concerns digital skills and inclusion. I declare an interest as chair of Go ON UK, a charity that I set up to build digital skills in the UK. There are 12 million adults in this country who cannot do basic things online, yet we know that the internet is one of the most powerful tools in combating the loneliness that I am delighted to say many people in this Chamber have already mentioned.

I end with a story from a woman I met in Birmingham, who told me that the internet has quite literally saved her life. Even I, prone to hyperbole, was sceptical, but she described how she was one of the 1.5 million people over 65 who see no one in a week. She had learnt how to use social media and had connected to family that she had not seen in many years. She told me that it had stopped her wanting to jump off the building where she lived. If that is not health creation, I do not know what is.