Will people continue to share their health data post-pandemic?

During Covid-19 the public accepted that data is key to healthcare policy, but that may change.

(Photo By HANNAH MCKAY - WPA POOL/GETTY IMAGES)

The past year has redefined the public’s relationship with data. Millions tuned in to watch government press conferences explaining case numbers and hospital admissions. Epidemiological phrases such as the R rate and “excess deaths” have become household terms.

The way data is shared between the NHS, government, local authorities and researchers has also been overhauled, spurred by the public’s willingness to hand over personal information. But this new relationship was formed in the crucible of a crisis. How will the pandemic shape expectations for data quality and transparency going forward? Ultimately, will people care?

At the beginning of the pandemic, notes John Appleby, chief economist at health think tank the Nuffield Trust, the data published by the NHS was a far cry from what we now know and expect.

“There were some very basic numbers put up by Public Health England and NHS England on deaths,” he says. “It was very crude stuff. It took them weeks to get the dashboard functioning properly – even showing trend data, data by region.”

Since then, data-sharing between institutions has improved remarkably says Imperial College London university researchers Sarah Jones and Melanie Leis, who work on a Covid-19 behaviour tracker that has been used by governments and policymakers worldwide. While previously getting data from the government and the NHS often involved much red tape and bureaucracy, Covid-19 has made everything accelerate.

“The economic impact of Covid has driven urgency, in ways that we’ve never seen before, for health providers, policymakers and economists to work together and speak each other’s language,” Jones says. “All the formalities went out the window – in a good way – with the aim of co-operation being paramount, [and above] ego or formality.”

Data has been integral to every aspect of the UK’s pandemic response – from helping supermarkets prioritise deliveries for those shielding, to researching and publicising key messages about Covid-19’s disproportionate impact on different ethnic groups. The flow of communication about cases and deaths has been crucial in gaining public buy-in for lockdowns, and for the ongoing success of the vaccination programme.

The fact that much of the general public can now read a data dashboard means that people will be better equipped to ask data-based questions of the government.

Advocates will be able to use government data in their demands, says Leis: “Specific interest groups will know that they can go and find that data and look for it to make their cases… I think we’re all more familiar with what’s out there and we all know that it should be informing decision-making.”

But will these new standards in the quality and transparency of data last? Appleby says that a lot of the lessons learned over the past year have been behind the scenes, such as increased data literacy among politicians. That won’t be lost after the pandemic.

In terms of speed and efficiency, Appleby says we can’t expect the pace we have seen in Covid-19 research to be maintained across the entire health service. It is likely, however, that researchers and the public will have higher expectations.

“Waiting times data – we have the technology to produce real-time, online data, hour by hour for [an NHS] trust,” he says. “It’s been done in some other countries. Why aren’t we doing that?”

Some of the key learnings of the pandemic will likely have permanent effects, hopefully shedding new light on other public health issues.

“It took them quite a long time to get into gear publishing stuff around ethnicity, but I think everybody recognised how important that was,” says Appleby. “And now that doesn’t take extra time, it just takes somebody to press the right button, and we can now have more data series, which are breaking down the population into more useful and policy-relevant groups.”

In areas where data is not as comprehensive, such as mental health and community health services, it’s now more clear than ever where the gaps are. Researchers, journalists and the general public are likely to demand more comprehensive data from government and health services going forward.

Whether public health data continues to be openly available is a matter of debate. This year’s great gains in quality and transparency were driven by an emergency, with visible real-time improvements. It remains to be seen just how much public appetite there is for data post-Covid. There are also questions about the extent to which people will happily give up their own information once the state of emergency is over.

Leis says once the public interest in healthcare dies down, debates around the privacy and ethics of data collection will become more prominent. Polling conducted in the summer by the National Data Guardian found that while threequarters of people are happy with datasharing under emergency circumstances such as Covid-19, 70 per cent believe that, data-sharing should return to the status quo ante after the pandemic.

The main concern is with private companies. Research by the Centre for Data Ethics and Innovation (CDEI) found that while two-thirds of people would be comfortable with their local authority sharing their data with the NHS, and over half with the police, only 15 per cent would feel comfortable with the council selling their data to private companies. The CDEI says that if local authorities and healthcare providers want to keep using data as they have been this past year, increasing trust through good data governance, informed by engagement with citizens, will be vital. Ultimately, ongoing improvements in healthcare data can’t happen without the buy-in of the public.

“I think what Covid-19 has done is… shown people how healthcare data can inform policy in a very real-time way,” says Leis. “But if it’s something further down the line, then people might not feel that immediate connection to the cause, and they might not think that the risk of something bad happening with their data is worth it.”

This article originally appeared in the Spotlight report on healthcare. You can download the full edition here.