Hello, I'm David Edmonds and this is the Pandemic Ethics Accelerator Podcast.
The UK Pandemic Ethics Accelerator was a project funded by the Arts and Humanities Research
Council in 2021 22 to examine the ethical challenges faced during the COVID pandemic,
it combined expertise from the University of Oxford, Bristol, Edinburgh University College, London and the Nuffield Council on Bioethics.
This six part podcast series covers some of the themes that emerged from the research.
During the height of the COVID pandemic, we became accustomed to watching, listening to and reading about experts in health statistics.
How many people tested positive for the disease in the past 24 hours?
How many died with the number of cases rising or falling and so on?
James Wilson, professor of Philosophy at University College London.
And Melanie Smallman, Associate Professor of science and technology studies at UCL,
have been researching the use and sometimes misuse of pandemic data.
James Wilson. Melanie Smallman, welcome, welcome.
Hello. We're talking today about pandemic data.
When one thinks about the pandemic, which gripped the world from early 2021, notable aspect of it was just how important data was.
We were constantly told about infection rates, mortality rates and so on.
In terms of the sheer quantity of data collected, has there ever been a disease quite like it?
Well, for most of us in our lifetimes, this is the first time there's been a human pandemic.
So in that respect, it probably is a disease unlike anything most of us have seen.
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.
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.
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,
as opposed to what would have been the case even 20 years, let alone 40 or 50 years ago.
Some of the key aspects of the pandemic turned out to be people collecting data on their own devices,
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
that put together with vastly greater computing power than we've ever had before,
did make this the first data pandemic. So that's what explains it.
We're just in an era of big data now. Indeed, people have been talking about big data for maybe almost 15 years now.
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.
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.
You identify three key data episodes.
Perhaps we can go through those one by one. The first one we touched on already, it was the data pandemic.
There were these daily press conferences in which data was very prevalent.
Yeah, I think that that was particularly around the beginning.
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
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.
But coupled with that, also lots of concerns about the app and about privacy and how data would be used.
And it just was right at the start of the pandemic. That push to move us into the lockdown, we think and argue,
came from those figures and the availability of that data and that very, very graphic graph of the case numbers going up.
You mentioned the app had to explain what that is. Yeah, the contact tracing app.
So that was being developed right at the beginning.
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.
That was basically how it worked in the end. And every day we were saturated with these graphs and with data.
The public had to get used to being presented information in a completely new way.
Indeed, one thing that was fascinating that compared to any other similar event,
but suddenly you had the chief scientific adviser, the chief medical officer next to you.
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.
And politicians found that they needed to communicate about the science in a way that they never had before.
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.
UPDATE So every day there has to be dispatches about how many cases there being how many deaths have been,
what's been happening so that people turned it into a 24 hour news story in a
way that just had never happened before in an infectious disease outbreak.
And part of this war against COVID was an infection survey as well, which was also introduced.
Yes. So the Office of National Statistics were carrying out random samples of the public to map the spread in the case numbers.
But there was also the Zoe app,
which was like a citizen science project where volunteers decided whether they had tested positive or whether they were well or not each day.
So there was just this overwhelming amount of data and information about how many infections were happening,
how many people were dying felt quite overwhelming. And one reason why both the Zoe app and also the own survey were so important,
because a lot of the time in a fight against infectious disease, you have maybe so small pinpricks of.
Like within oceans of ignorance because before you can ever really log within a health system is when people go and see a
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,
but they won't be ill enough to go see the doctor.
So you don't really have an idea of how many cases there are in the community, how they're spreading around.
And so the onus survey and the ZOE survey turned out to be really important as a way of
actually trying to get a sense of what the rates of infection in the country are as a whole,
how they're moving around. Are we on an upward slope? Are we on a downward slope?
And in fact, that that's maybe one thing we did quite well in the UK,
a variety of other countries, often with quite good epidemiological systems like Sweden,
who didn't have a survey like the IRA in their service,
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.
Over time, we'll come back to how Britain did overall.
You mentioned the scientists standing next to the politicians. I wonder what the motivation was for that.
Was it because politicians were incapable of presenting the data or were they providing cover for often unpopular measures?
It was definitely a case of sharing responsibility, and we're arguing that the data provided the authority to act.
So we had a Prime Minister who had a fairly free marketeering party behind him,
who were very uncomfortable with the idea of asking people to stay at home and closing down businesses.
So it would have been very difficult for him to have asked for that without
the authority of the data and perhaps the two experts standing next to him.
One thing that's really interesting to reflect on is the role of the centres following the science,
which was used almost every day at the start of the pandemic.
And it turned out to be a way of saying, Well, here's what the scientists say.
What I need to do as a politician, therefore I need to do it.
But one thing that was rather intriguing is that as we got further on in the pandemic,
it seemed that the government became more and more willing to disregard scientific advice,
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.
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.
So it seemed that rather than the science providing a solid bedrock,
it just seemed to be something that the politicians are to use to help them to validate whatever policy they wanted to enact.
Well, I better pick up on that. Why was there at the beginning that deference to the science?
And then later on just seeing the science has one input amongst many.
We've been looking specifically at the data rather than the science.
The argument that we make is that at the beginning Boris Johnson needed the authority to act in the data,
provided that so with data comes power and authority.
So he used that power and authority at the beginning to be able to do the things which he wouldn't otherwise have done.
So ask people to stay at home and to impose the lockdown.
As time progressed, his own authority as a prime minister became challenged when he was found to be guilty of breaking lockdown rules.
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.
And at that point the data stopped being collected, stopped being announced, and the end of the pandemic was heralded.
It wasn't really the end of the pandemic. We've seen numbers rising several times since then.
But the point is we don't know because the numbers aren't collected and publicised in the same way.
One thing that's helpful to throw into the mix is the role of the emergency framing.
One thing that was terrifying was that moment in early March 2020 when you sort
of saw what was happening in Italy and the health system being overwhelmed,
realising this was going to be coming here. And it's a bit like partying on the Titanic because you see the iceberg emerging.
And so suddenly when that spill realisation hit,
we were in sort of full crisis mode and you could see that both the politicians and the media and maybe the
population as a whole switched into a sort of a war framing because this is the most important thing we do.
Everything has to be put aside, but it's impossible to keep that up for two years.
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,
well, actually, we're moving it to something which is not quite as bad as it was.
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,
of thinking about what kind of society do we want to be?
How do we make that balance between sort of protecting one another from a disease and just going about our day to day life?
So that was the first episode.
The second episode you write about was perhaps the biggest catastrophe in the UK during the pandemic, and that was the care home scandal.
Just sketch out what that was.
In March 2020, it came to light that thousands of people were being discharged from hospital into care homes with COVID,
and as a result there was a massive number of deaths in care homes where the amount of protective equipment was really very low.
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,
but actively being exposed to it in a way that I can't imagine it would have been allowed if it was widely known.
And the key part of this is that information about who is in care homes is missing and it continues to be missing.
So we don't know how many people last night slept in the care home.
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.
So as a result of not knowing and absolutely no data about these people, they were made incredibly vulnerable in the context of COVID.
So that's fascinating in a pandemic which was saturated with data.
We have one corner of the pandemic which is statistically impoverished.
Yes, indeed.
One thing that was both fascinating and terrifying about the pandemic is to realise how strong some of the aspects of our data infrastructure,
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.
You have really important population level datasets which go back over 20 years
and which support a vast variety of really high quality health research.
Whereas in the space of care homes there's virtually nothing.
In fact, things were so bad that at the start of the pandemic, very few care homes,
only about a third of care homes even had access to an NHS email account.
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.
And so that for most of the care homes during the pandemic,
they weren't even able to receive confidential information about the people who were living that.
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.
By the end of the permit we've got up to 70% of people having access to NHS email.
That just shows you the difference of the scales but also the scale of the challenge and why
it is that it's so difficult to find out the most basic things about care homes in the UK.
We've covered the first two episodes that you identify in the pandemic.
The third was, and I put this in inverted commas, the end of the pandemic.
Well, the end of the pandemic was a big question mark.
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.
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.
And in this case, ending it. But numbers of deaths were declining.
So it's not as if the pandemic was as serious as it was in the beginning.
There was a reason to begin to cut down on data collection.
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,
the population also the fact that a large number of people in addition had COVID at least once,
maybe twice, and that the threat that it posed was very much diminished.
But just as the curve on the way up is exponential for disease,
so it's often an exponential decline that you see reduced numbers of case of disease, number of cases, deaths.
But we went nowhere at the time that the government declared that the pandemic was effectively over.
In the months after they declared that the pandemic was pretty much over 200 people a day were still dying of of COVID.
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.
Do you think this was a cynical ploy to make people feel that life was returning to normal?
Yes. I don't know if it needs to be a cynical ploy.
I think it definitely was a ploy to make people feel that life is getting back to normal.
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
and a public who was very unhappy that the Prime Minister had broken the lockdown rules.
So effectively a Prime Minister who had no more authority to continue the rules around the pandemic.
Of course, all public and private bodies use data.
Is that an established good practice with data and what does it consist in getting data use right for?
A public body is complex, but there is a set of simple rules that you can follow and take into account.
Maybe the most important aspect of it is making sure that you meet citizens reasonable expectations in the way that you use,
collects and share on data as to say so that people are in a position to understand what data is being collected about them,
how it's being used within a particular public body. Is it then going to be shared on with other sorts of public bodies?
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,
and you should that content to trust government to that point. But at that moment where data is being collect.
In a way that perhaps seems underhand or being shared in ways that people hadn't anticipated.
That's often where you get a series of flash points so that within the pandemic,
there's something that I was expecting to be much more controversial than it was.
I think it may be just that there was so much going on that nobody noticed it.
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
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.
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,
it's the health purposes and then to make it's people's name and address and aspects of the health information available
to the police for the purposes of enforcement that seem to be precisely the sort of thing that's a flash point.
So I always expecting that to be much more controversial.
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.
But that's the sort of thing that I don't think is usually a good idea to do. So you're both academics.
If you were grading the government on its handling of the data during the pandemic, what would you give it?
Alpha plus, gamma minus? There's some aspects I thought that were very well handled indeed,
where people had planned for exactly the sort of thing to happen and they executed the plan.
And then data flowed well.
For a long time in the UK we've had the control of patient information regulations which basically allow the Health Minister to
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.
So something like that worked well.
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.
But there are other aspects of the government response that are just frankly bizarre, particularly at the early stages of the pandemic.
Local directors of public health, whose job it was to protect the health of the people in their local area,
find it incredibly difficult to actually get the data they needed from central government.
In other aspects, the government had a pandemic ethics framework which it then never used.
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.
Campbell Best benefit. You want to come in? Yeah, I think it depends on who you are or who you were during the pandemic.
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?
I think the app was vaguely helpful. The question to me now is what happens next?
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.
But secondly, should we be thinking about new rules for an emergency in the future and what would they look like?
Hopefully this will be the last pandemic in our lifetime. Very unlikely.
What are the lessons for the next pandemic?
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,
but then secondly, actually to make use of that plan when it actually comes to the pandemic.
A second thing is just the sheer importance of maintaining public trust, and that requires trustworthiness on the part of politicians.
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.
You notice that you're in a position where in order for the pandemic response to to work,
people have to believe the message that's being given by politicians.
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.
And you realise that, well,
the biggest weapon you have in your arsenal in public health terms is public compliance and getting everybody to agree to take the precautions.
And insofar as people don't trust the people who are asking them to to do that, you're in all sorts of trouble.
Trust. Is that the biggest lesson really? Well, I think that there's a couple of other things here as well.
It's not a big surprise to ask people to follow different rules during a pandemic in an emergency,
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
in an emergency is one of the things that should come out of our experience with COVID.
And I think tied to that is a really, really important question about how does this end.
So how do these emergency regulations get sunsetted or do they continue forever?
Because the level of surveillance and data sharing that might be acceptable during a pandemic in a peacetime scenario
is a pretty authoritarian regime and not that compatible with the kind of democracy most of us are comfortable with.
So a proper conversation about how does the pandemic end and what happens to the data and the data collection,
because the infrastructure you build during an emergency doesn't suddenly disappear.
So how do we dissembling and how does it all end? Melanie Smallman, James Wilson, thank you very much indeed.
Thanks. Thank you. Thanks for listening to the Pandemic Ethics Accelerator podcast.
You can hear more in this six part series on University of Oxford Podcasts or at Pandemic Ethics dot UK.