Data Conference 2020: Change in NHS strategy needed

The NHS needs to be a data service as well as a health service to ensure the best possible information is available for decision-making during crises such as the current pandemic.

A joined-up system for sharing health data is crucial in changing the course of the pandemic.

Dr Helen Stagg, from the University of Edinburgh’s Usher Institute, told a panel discussion on Data in Public Health Crises: Past and Present: “We are rightly proud of the NHS and have national public health on top of that but I’m not convinced we’ve ever thought of it as a national data service.

“None of this works in a pandemic setting without the extra layer of a national data service. A change in mindset is perhaps a route forward.”

Phil Couser, director of Data-Driven Innovation at Public Health Scotland, admitted that Covid-19 has shown there is much to learn.

He said: “We’ve had to rely on a lot of manual effort, people going into systems to produce reports, which were e-mailed and manually compiled into a Scotland-wide report. If we could move in the direction Helen suggests, that would negate the need for that.”

Couser said the involvement of so many people inevitably led to mistakes and he had seen basic errors creep in, including decimal points in the wrong place.

He said: “One health board moved a column on a spreadsheet, which resulted in politicians getting involved in difficult discussions. We should be pooling data in a more automated way than we are able to.”

Mark Woolhouse, professor of infectious disease epidemiology at the University of Edinburgh, said that despite more than a decade of preparation for pandemic influenza, Scotland was not ready for Covid-19: “It was obvious for some time that when the next pandemic came, we would need rapid access to public health data… that’s been a big problem.”

He quoted from an e-mail he sent to the Chief Medical Officer for Scotland in May 2018: “My personal view is the system for accessing health data in Scotland is terminally dysfunctional. Scottish lives have been put at risk. I dread the consequences if we ever find ourselves facing a health emergency like pandemic influenza.”

Woolhouse said the reply he received was “very ordinary”.

Couser also accepted “table-top preparedness” was not enough: “Some systems were just not designed to deal with the scale of the data we have been pulling through.

“We have an integrated healthcare system, but within it, a lot of different elements still do their own thing on data and we spend a lot of effort trying to join things up. “

Woolhouse highlighted the challenges of making key decisions during the first wave of the pandemic in Scotland: “We had very little data to go on [in March], and limited testing capacity, so this was done on principles of epidemiology and public health, not data-driven.”

He also said “fine-grained behavioural data” was missing when making decisions on pandemic restrictions. “We need to know in detail what people in Scotland are doing because that will give us hints to tell us whether what they are doing, or not, will slow the spread of infection. We won’t get that from the data streams available to us.”

Couser addressed the balancing act between benefit and risk during a pandemic: “The potential disbenefits of not being able to share data rapidly are huge. If one or two people feel slightly aggrieved, you have to balance that with a risk of harm to thousands, even millions.”

Stagg said: “There is power in admitting with this pandemic that we cannot make a single decision that doesn’t cause problems for someone, that we are trying our best in terms of the economy and public health. If you message along those lines, you have a better chance of explaining to people why we need that data.”

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