Mind the gap

One of the important things data has shown during the pandemic is the disproportionate impact covid has had on black and minority ethnic communities. But, as a recent HSJ webinar heard, it’s an incomplete picture – because data on ethnicity is poorly collected.

“One study showed something like 26 per cent of electronic health records from primary care just didn’t have data on ethnicity,” said Natalie Banner, lead for the Understanding Patient Data initiative hosted by Wellcome.

“So we’ve got some really big gaps in the data, and that makes it very challenging to talk to patients and the public and indeed health professionals about good quality data and what it means and what the benefits can be, because we do definitely have some challenges there.”

Our panellists agreed that, for data to be really valuable in informing services, it needs to be able to assist in telling a story about the experience and outcomes of healthcare. And so while Josh Keith argued there was an important role for data analysts to play if managers are to be able to make evidence-based decisions, he emphasised they were not the only important players.

“Analysts and anyone using data, not just in the NHS, should be asking both what does it tell us but also what doesn’t it tell us? Who’s missing from this data but also what can’t data tell us?”

“Analysts and anyone using data, not just in the NHS, should be asking both what does it tell us but also what doesn’t it tell us? Who’s missing from this data but also what can’t data tell is? It can’t tell some of that real human aspects of the story that are both really useful for the insight into what changes could be made and also what matters to people,” suggested Mr Keith, senior fellow at the Health Foundation.

The initiative Ms Banner leads is specifically focused on involving the public in conversations about data, and she said covid has presented a mixed blessing in this sense – a greater focus on statistics, but perhaps less of an opportunity for patient engagement.

“We’re continuing to talk about the need to meaningfully involve people in the way that decisions are being made, in ensuring that there is meaningful transparency, that people can find out information about data is being used and so on.

“But in a crisis, it is very, very difficult to meaningfully involve the public in decisions that are being made about data. When decisions need to be made quickly it’s much more challenging.”

Addressing that will be important, our panel agreed – because what is not in doubt is the need for reliable, joined up information that can tell accurate stories and help guide decisions on services.

“Data really is the foundation,” suggested Shaun Collings, regional business director UK public sector at Pure Storage. “It can empower, but we’ve got to be really clear how we’re going to manage it, how we’re going to store it, how we’re going to make the best use of it.”

The free webinar can now be watched here.