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Hello, I'm David Edmonds and this is the Pandemic Ethics Accelerator Podcast.

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The UK Pandemic Ethics Accelerator was a project funded by the Arts and Humanities Research

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Council in 2021 22 to examine the ethical challenges faced during the COVID pandemic,

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it combined expertise from the University of Oxford, Bristol, Edinburgh University College, London and the Nuffield Council on Bioethics.

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This six part podcast series covers some of the themes that emerged from the research.

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During the height of the COVID pandemic, we became accustomed to watching, listening to and reading about experts in health statistics.

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How many people tested positive for the disease in the past 24 hours?

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How many died with the number of cases rising or falling and so on?

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James Wilson, professor of Philosophy at University College London.

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And Melanie Smallman, Associate Professor of science and technology studies at UCL,

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have been researching the use and sometimes misuse of pandemic data.

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James Wilson. Melanie Smallman, welcome, welcome.

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Hello. We're talking today about pandemic data.

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When one thinks about the pandemic, which gripped the world from early 2021, notable aspect of it was just how important data was.

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We were constantly told about infection rates, mortality rates and so on.

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In terms of the sheer quantity of data collected, has there ever been a disease quite like it?

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Well, for most of us in our lifetimes, this is the first time there's been a human pandemic.

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So in that respect, it probably is a disease unlike anything most of us have seen.

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And what's absolutely clear is that the data has been really important in creating the power and authority for political figures to act on this.

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And perhaps that's why the data has been so visible in the kind of slide shows behind the Prime Minister in the press conferences every day.

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One thing that it's important to reflect on is just how much more data and how much more cheaply we're able to collect it now,

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as opposed to what would have been the case even 20 years, let alone 40 or 50 years ago.

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Some of the key aspects of the pandemic turned out to be people collecting data on their own devices,

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whether they're phones or via something the Zoe app. So everybody was able to take part in this big project of digital epidemiology and

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that put together with vastly greater computing power than we've ever had before,

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did make this the first data pandemic. So that's what explains it.

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We're just in an era of big data now. Indeed, people have been talking about big data for maybe almost 15 years now.

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So people often said that what made us into the era of big data was the idea that suddenly we had much greater volume, velocity and variety of data.

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The sheer amount of data that we're collecting moving around the world is just out of any scale from what was possible even 20 years ago.

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You identify three key data episodes.

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Perhaps we can go through those one by one. The first one we touched on already, it was the data pandemic.

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There were these daily press conferences in which data was very prevalent.

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Yeah, I think that that was particularly around the beginning.

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We were looking at how data was used throughout the pandemic and there was just this particular moment right at the beginning where it was that sharp

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upward curve that everybody was looking at and learning about what exponential growth is and these daily figures right at the start of the pandemic.

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But coupled with that, also lots of concerns about the app and about privacy and how data would be used.

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And it just was right at the start of the pandemic. That push to move us into the lockdown, we think and argue,

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came from those figures and the availability of that data and that very, very graphic graph of the case numbers going up.

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You mentioned the app had to explain what that is. Yeah, the contact tracing app.

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So that was being developed right at the beginning.

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And the idea that we could have a mobile phone app that would enable us to be monitored and warn as if somebody has come into contact with you.

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That was basically how it worked in the end. And every day we were saturated with these graphs and with data.

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The public had to get used to being presented information in a completely new way.

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Indeed, one thing that was fascinating that compared to any other similar event,

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but suddenly you had the chief scientific adviser, the chief medical officer next to you.

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She either the prime minister or the minister for health, so that it wasn't just a political story, it suddenly became a science story.

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And politicians found that they needed to communicate about the science in a way that they never had before.

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In a way, it became almost like when you see a war being covered or something like that, it's almost as if there has to be.

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UPDATE So every day there has to be dispatches about how many cases there being how many deaths have been,

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what's been happening so that people turned it into a 24 hour news story in a

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way that just had never happened before in an infectious disease outbreak.

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And part of this war against COVID was an infection survey as well, which was also introduced.

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Yes. So the Office of National Statistics were carrying out random samples of the public to map the spread in the case numbers.

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But there was also the Zoe app,

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which was like a citizen science project where volunteers decided whether they had tested positive or whether they were well or not each day.

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So there was just this overwhelming amount of data and information about how many infections were happening,

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how many people were dying felt quite overwhelming. And one reason why both the Zoe app and also the own survey were so important,

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because a lot of the time in a fight against infectious disease, you have maybe so small pinpricks of.

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Like within oceans of ignorance because before you can ever really log within a health system is when people go and see a

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doctor you realise that there's so many people who will either get the disease but it be asymptomatic or they'll be a bit ill,

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but they won't be ill enough to go see the doctor.

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So you don't really have an idea of how many cases there are in the community, how they're spreading around.

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And so the onus survey and the ZOE survey turned out to be really important as a way of

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actually trying to get a sense of what the rates of infection in the country are as a whole,

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how they're moving around. Are we on an upward slope? Are we on a downward slope?

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And in fact, that that's maybe one thing we did quite well in the UK,

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a variety of other countries, often with quite good epidemiological systems like Sweden,

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who didn't have a survey like the IRA in their service,

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they've been much more in the dark and they find it much more difficult to estimate what the effectiveness of their policies actually was.

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Over time, we'll come back to how Britain did overall.

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You mentioned the scientists standing next to the politicians. I wonder what the motivation was for that.

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Was it because politicians were incapable of presenting the data or were they providing cover for often unpopular measures?

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It was definitely a case of sharing responsibility, and we're arguing that the data provided the authority to act.

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So we had a Prime Minister who had a fairly free marketeering party behind him,

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who were very uncomfortable with the idea of asking people to stay at home and closing down businesses.

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So it would have been very difficult for him to have asked for that without

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the authority of the data and perhaps the two experts standing next to him.

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One thing that's really interesting to reflect on is the role of the centres following the science,

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which was used almost every day at the start of the pandemic.

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And it turned out to be a way of saying, Well, here's what the scientists say.

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What I need to do as a politician, therefore I need to do it.

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But one thing that was rather intriguing is that as we got further on in the pandemic,

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it seemed that the government became more and more willing to disregard scientific advice,

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or at least to say that needs to be balanced against economic and other imperatives. So that's where we started with following the science.

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It was, well, science is just one of many inputs into a decision making process, and that seems interesting, something that we've been reflecting on.

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So it seemed that rather than the science providing a solid bedrock,

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it just seemed to be something that the politicians are to use to help them to validate whatever policy they wanted to enact.

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Well, I better pick up on that. Why was there at the beginning that deference to the science?

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And then later on just seeing the science has one input amongst many.

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We've been looking specifically at the data rather than the science.

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The argument that we make is that at the beginning Boris Johnson needed the authority to act in the data,

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provided that so with data comes power and authority.

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So he used that power and authority at the beginning to be able to do the things which he wouldn't otherwise have done.

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So ask people to stay at home and to impose the lockdown.

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As time progressed, his own authority as a prime minister became challenged when he was found to be guilty of breaking lockdown rules.

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Our argument is that at that point, the power within the data was a problem because the Prime Minister needed to take that power back.

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And at that point the data stopped being collected, stopped being announced, and the end of the pandemic was heralded.

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It wasn't really the end of the pandemic. We've seen numbers rising several times since then.

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But the point is we don't know because the numbers aren't collected and publicised in the same way.

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One thing that's helpful to throw into the mix is the role of the emergency framing.

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One thing that was terrifying was that moment in early March 2020 when you sort

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of saw what was happening in Italy and the health system being overwhelmed,

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realising this was going to be coming here. And it's a bit like partying on the Titanic because you see the iceberg emerging.

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And so suddenly when that spill realisation hit,

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we were in sort of full crisis mode and you could see that both the politicians and the media and maybe the

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population as a whole switched into a sort of a war framing because this is the most important thing we do.

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Everything has to be put aside, but it's impossible to keep that up for two years.

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And certainly there did need to be a change from thinking about this as a as an emergency for which all hands need to be at the pump to think,

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well, actually, we're moving it to something which is not quite as bad as it was.

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And also we somehow need to get back to normal. That may be one reason why you saw a shift away from the idea of following the science at all costs,

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of thinking about what kind of society do we want to be?

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How do we make that balance between sort of protecting one another from a disease and just going about our day to day life?

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So that was the first episode.

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The second episode you write about was perhaps the biggest catastrophe in the UK during the pandemic, and that was the care home scandal.

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Just sketch out what that was.

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In March 2020, it came to light that thousands of people were being discharged from hospital into care homes with COVID,

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and as a result there was a massive number of deaths in care homes where the amount of protective equipment was really very low.

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And basically missing. So the story that emerged was some of our most vulnerable people in care homes being offered not just no protection from COVID,

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but actively being exposed to it in a way that I can't imagine it would have been allowed if it was widely known.

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And the key part of this is that information about who is in care homes is missing and it continues to be missing.

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So we don't know how many people last night slept in the care home.

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There is no central database or record of who lives in care homes, let alone understanding what their needs are and what complex needs they are.

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So as a result of not knowing and absolutely no data about these people, they were made incredibly vulnerable in the context of COVID.

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So that's fascinating in a pandemic which was saturated with data.

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We have one corner of the pandemic which is statistically impoverished.

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Yes, indeed.

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One thing that was both fascinating and terrifying about the pandemic is to realise how strong some of the aspects of our data infrastructure,

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our for health and public policy in the UK, so that the way that data is collected within the GP system, within hospitals is strong and robust.

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You have really important population level datasets which go back over 20 years

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and which support a vast variety of really high quality health research.

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Whereas in the space of care homes there's virtually nothing.

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In fact, things were so bad that at the start of the pandemic, very few care homes,

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only about a third of care homes even had access to an NHS email account.

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And an NHS email account is the very least you need in order to receive confidential information about the people who are living in your care home.

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And so that for most of the care homes during the pandemic,

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they weren't even able to receive confidential information about the people who were living that.

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One of the big pushes that was made across the health and care system was to get most of our care homes onto NHS email.

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By the end of the permit we've got up to 70% of people having access to NHS email.

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That just shows you the difference of the scales but also the scale of the challenge and why

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it is that it's so difficult to find out the most basic things about care homes in the UK.

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We've covered the first two episodes that you identify in the pandemic.

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The third was, and I put this in inverted commas, the end of the pandemic.

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Well, the end of the pandemic was a big question mark.

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What we came to know is the end of the pandemic appears to have been when we stopped counting cases rather than when we stopped having cases.

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And so in this instance, we argue that, again, data is playing a key role in our sense of whether the pandemic exists or not.

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And in this case, ending it. But numbers of deaths were declining.

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So it's not as if the pandemic was as serious as it was in the beginning.

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There was a reason to begin to cut down on data collection.

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It's true that we were a long way from where we were at the peak of the pandemic, the result of that being very high rates of vaccination,

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the population also the fact that a large number of people in addition had COVID at least once,

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maybe twice, and that the threat that it posed was very much diminished.

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But just as the curve on the way up is exponential for disease,

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so it's often an exponential decline that you see reduced numbers of case of disease, number of cases, deaths.

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But we went nowhere at the time that the government declared that the pandemic was effectively over.

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In the months after they declared that the pandemic was pretty much over 200 people a day were still dying of of COVID.

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And it seemed very odd to many people that you could claim that this was that point over and we didn't need to worry about it anymore.

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Do you think this was a cynical ploy to make people feel that life was returning to normal?

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Yes. I don't know if it needs to be a cynical ploy.

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I think it definitely was a ploy to make people feel that life is getting back to normal.

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And if you think about the political context, the prime minister then had a back benchers who were very unhappy with what was going on

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and a public who was very unhappy that the Prime Minister had broken the lockdown rules.

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So effectively a Prime Minister who had no more authority to continue the rules around the pandemic.

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Of course, all public and private bodies use data.

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Is that an established good practice with data and what does it consist in getting data use right for?

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A public body is complex, but there is a set of simple rules that you can follow and take into account.

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Maybe the most important aspect of it is making sure that you meet citizens reasonable expectations in the way that you use,

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collects and share on data as to say so that people are in a position to understand what data is being collected about them,

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how it's being used within a particular public body. Is it then going to be shared on with other sorts of public bodies?

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If people feel that there's a clear public benefit in data being used in a certain way and it's transparent how it's being used,

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and you should that content to trust government to that point. But at that moment where data is being collect.

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In a way that perhaps seems underhand or being shared in ways that people hadn't anticipated.

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That's often where you get a series of flash points so that within the pandemic,

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there's something that I was expecting to be much more controversial than it was.

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I think it may be just that there was so much going on that nobody noticed it.

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But when the government made it possible for the information about who had been asked to self-isolate by the track and trace service was

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made available to the police so that in certain circumstances the police could go round it and check if you were there and then find you.

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I thought that was exactly the sort of case where people usually find it quite problematic, where health data is usually assumed to be confidential,

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it's the health purposes and then to make it's people's name and address and aspects of the health information available

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to the police for the purposes of enforcement that seem to be precisely the sort of thing that's a flash point.

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So I always expecting that to be much more controversial.

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It may just be that amongst all the many things that seem to have gone wrong, nobody noticed that or no, nobody made it a cause.

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But that's the sort of thing that I don't think is usually a good idea to do. So you're both academics.

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If you were grading the government on its handling of the data during the pandemic, what would you give it?

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Alpha plus, gamma minus? There's some aspects I thought that were very well handled indeed,

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where people had planned for exactly the sort of thing to happen and they executed the plan.

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And then data flowed well.

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For a long time in the UK we've had the control of patient information regulations which basically allow the Health Minister to

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flip a switch if you're in a public health emergency to allow patient data to flow more freely for the purposes of public health.

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So something like that worked well.

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It was triggered in February 2020, well before the lockdown that allowed the health systems to do a lot more in the fight against the disease.

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But there are other aspects of the government response that are just frankly bizarre, particularly at the early stages of the pandemic.

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Local directors of public health, whose job it was to protect the health of the people in their local area,

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find it incredibly difficult to actually get the data they needed from central government.

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In other aspects, the government had a pandemic ethics framework which it then never used.

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I mean, the aspects way one might want to say that's an A-plus response, but other aspects, we'd say, well, yeah, Gamma at best.

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Campbell Best benefit. You want to come in? Yeah, I think it depends on who you are or who you were during the pandemic.

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So if you were somebody living or working in a care home, then I think it would be a total fail, wouldn't it, for ordinary citizens?

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I think the app was vaguely helpful. The question to me now is what happens next?

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And I think giving a proper thought to whether the existing ethical guidelines for the good use of data in policy were used or not is a key question.

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But secondly, should we be thinking about new rules for an emergency in the future and what would they look like?

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Hopefully this will be the last pandemic in our lifetime. Very unlikely.

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What are the lessons for the next pandemic?

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For me, the main two lessons would be, first of all, it's important to have a pandemic plan, to think things through in advance,

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but then secondly, actually to make use of that plan when it actually comes to the pandemic.

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A second thing is just the sheer importance of maintaining public trust, and that requires trustworthiness on the part of politicians.

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One of the things that went wrong in our pandemic response, it's from Dominic Cummings and his eye test onwards to Boris Johnson and the parties.

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You notice that you're in a position where in order for the pandemic response to to work,

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people have to believe the message that's being given by politicians.

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They need to accept that there really is a moment where everybody's going to be sacrificing together or else people just sort of give up.

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And you realise that, well,

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the biggest weapon you have in your arsenal in public health terms is public compliance and getting everybody to agree to take the precautions.

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And insofar as people don't trust the people who are asking them to to do that, you're in all sorts of trouble.

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Trust. Is that the biggest lesson really? Well, I think that there's a couple of other things here as well.

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It's not a big surprise to ask people to follow different rules during a pandemic in an emergency,

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but it wasn't clear what those different rules were. So I think that looking at how data should be taken care of and what data ethics means

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in an emergency is one of the things that should come out of our experience with COVID.

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And I think tied to that is a really, really important question about how does this end.

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So how do these emergency regulations get sunsetted or do they continue forever?

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Because the level of surveillance and data sharing that might be acceptable during a pandemic in a peacetime scenario

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is a pretty authoritarian regime and not that compatible with the kind of democracy most of us are comfortable with.

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So a proper conversation about how does the pandemic end and what happens to the data and the data collection,

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because the infrastructure you build during an emergency doesn't suddenly disappear.

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So how do we dissembling and how does it all end? Melanie Smallman, James Wilson, thank you very much indeed.

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Thanks. Thank you. Thanks for listening to the Pandemic Ethics Accelerator podcast.

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You can hear more in this six part series on University of Oxford Podcasts or at Pandemic Ethics dot UK.