Many of us may have wanted to put the Covid pandemic out of our minds once it passed — but those with more medical and scientific understanding would be justified in exploring a little more deeply into how well the UK government and our NHS services handled it. What can we see from the facts and figures around lockdowns, mortality rates and even the efficacy of testing?

One ideal tool for this type of enquiry is Freedom of Information — the right to ask public authorities for recorded information. And the Trust The Evidence project, run by Tom Jefferson and Carl Heneghan, has made very good use of that, thanks to WhatDoTheyKnow. 

Their approach? Small, focused FOI requests lodged via WhatDoTheyKnow (and therefore accessible for everyone to see), followed by deeper analysis and articles both in the media and on their own SubStack, which is supported by an engaged audience.

We asked Tom and Carl to tell us a bit more about how they’ve used FOI and what they have discovered about the UK’s response to the pandemic, as well as other pressing health matters. First of all, how have they come to be working together?

“We’d collaborated for a decade before beginning our research on the evidence surrounding the Covid pandemic in 2020. We’re both medically trained epidemiologists and academics with a background in primary care.”

As you may remember, in the UK, lockdowns and the closure of many businesses and public spaces began in the spring of 2020. “As early as April 2020, we predicted that lockdowns would have devastating effects on both lives and the economy.”

Background knowledge

They weren’t basing that prediction on mere speculation— they had the professional expertise to back it up. Tom is a Senior Associate Tutor at the University of Oxford, a former researcher at the Nordic Cochrane Centre and a former scientific coordinator for producing HTA reports on non-pharmaceuticals for Agenas, the Italian National Agency for Regional Healthcare. 

Carl is Professor of Evidence-Based Medicine at the University of Oxford. He is a clinical epidemiologist with expertise in evidence-based medicine, research methods, and evidence synthesis. He also works as an NHS urgent care GP. 

Nonetheless, their early interventions did not go down well.

“We faced persecution for asking questions. We endured personal attacks and censorship from self-proclaimed experts, influencers, and the very institutions we’d dedicated decades of our careers to. 

“That’s when we decided to launch our own SubStack forum called “Trust the Evidence”, where we focus on examining evidence rather than popular narratives or spin. The goal is to advocate for policies grounded in evidence rather than dogma, ultimately driving meaningful change.”

And where does that evidence come from? 

“Well — this is where Freedom of Information requests become important.”

Advocating for policies based on evidence

“Over the last six years we have either reviewed or made hundreds of FOI requests, and in WhatDoTheyKnow we’ve found information released via other people’s requests, as well as the ability to pursue our own inquiries, openly and with short, sharp questions. We now routinely use FOI to try to understand what’s behind the official narrative and to verify its evidence base. 

“So, for example, in the winter of 2021-2022 we set out to analyse public authorities’ understanding of PCR testing for SARs-CoV-2 in the UK by looking at FOI requests others had posed in 2020-21 to NHS Health Trusts, laboratories, and government agencies such as Public Health England and the Department of Health and Social Care. 

“We searched WhatDoTheyKnow using specific terms, such as “PCR cycle threshold,” to understand the use of PCR in the UK public sector, and we reviewed 300 FOI requests from more than 150 members of the public who were asking questions about the £37 billion Test And Trace programme. We noticed that, often, members of the public understood and knew more about the topic than those who responded. We found evidence of extensive misuse and misreporting of the tests used.

“So FOI requests showed that members of the public understood the types of tests used, their shortcomings, and the willingness of public bodies to bend the results to fit the general narrative, which supported the government’s introduction of emergency measures without a credible assessment of the threat. 

“We quickly followed up this work with research into several more related areas: Covid benefits fraud; various definitions of Covid deaths; excessive mortality in care homes; the potential harms and benefits of Covid vaccines (Comirnaty regulatory evidence & adverse effects, Vaxzevria and Yellow Card adverse-event data); Hospital-acquired COVID / respiratory-virus infections; Avian-influenza vaccines and procurement and then more broadly into NHS expenditure/accountability; Influenza and NHS winter-crisis evidence.”

A hectic few years

There is clearly an audience for this work. Carl and Tom are closing in on close to 1,400 posts to date, with subscribers from 140 countries having viewed their mailouts more than 11 million times.  

But it doesn’t stop there. “When we consider the sharing and republication of our work, as well as media interest and parliamentary questions, the reach becomes remarkable. The content has been republished in various outlets and cited by multiple news organisations, with translations into several foreign languages.

“This all shows the central role that WhatDoTheyKnow has played and continues to play in our work. Subscribing to WhatDoTheyKnow Pro has made things much easier, as we can send batch requests to multiple authorities at once, building up a national dataset that didn’t previously exist. 

“At present, we are working on summarising the replies to 161 batched FOI requests to NHS bodies regarding Influenza/NHS winter-crisis evidence. We’ll soon follow that up with over 200 requests to NHS bodies for details of their 2026-27 winter plans. 

“It’s been a hectic few years of work! We can only add that FOI and WhatDoTheyKnow are central to what we’re doing.

“We’ve managed to get replies; but also, public bodies often try to evade transparency. We write about that, too — it is all part of the evidence.”

Evidence, rigour and expertise

The ultimate aim? “We present robust evidence. We apply scientific rigour alongside our extensive clinical expertise. This approach ensures that our insights are credible, and also deeply aligned with the societal values that should underpin healthcare. 

“And by bringing diverse voices and perspectives into our discussions, we strive to foster richer conversations that pave the way for safer, more informed healthcare.” 

Many thanks to Tom and Carl for sharing their experiences of using WhatDoTheyKnow. You can subscribe to Trust The Evidence to access their full archive of posts and they say, “we’re happy to see our posts republished with proper acknowledgement.” 

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Image: iMattSmart