Trust in NHS ‘poor and diminishing’ among communities hit hardest by covid

People in so-called “hard to reach” communities are faced with stigma and racism due to the covid pandemic but have dwindling trust in the health service, the research found.

They are worried about how their personal data will be used by the NHS and other state bodies. They are particularly concerned that their details will be passed on to the police or immigration services.

This finding has taken on new significance since HSJ revealed this weekend that the police have been given access to test and trace data on those told to self-isolate.

NHSX carried out user research “with those communities with the voices that we don’t traditionally hear” in East London and the West Midlands, according to Shabira Papain, NHSX’s lead on equality and health inequality. The agency found “trust in the NHS and in government agencies is really poor and is diminishing”.

The agency used its “people’s network” for the research. It is a citizen-led network representing black and minority ethnic communities developed “to bring those underrepresented voices into the heart of what we do”, Ms Papain said.

“It’s vital that we have those voices so that we can learn and so we have legitimacy to proceed,” she said during a panel session at HSJ’s Digital Strategy Summit last week. A report of the full qualitative and quantitative results is not expected to be completed until March, however.

The research found “layers and layers of disinformation that exists within communities” including conspiracy theories linking the 5G telecoms network or WiFi to the virus.

“We also found that, actually, people weren’t willing to share their contact information. They understood it was important, but they weren’t going to share any contact information with agencies because trust was poor,” Ms Papain said.

A key discovery was how people in these communities are opposed to the concept of being tracked, particularly in relation to the NHS covid-19 contact tracing app. “People wanted absolute confirmation that their details – anything that was going to be in the app – wasn’t going to be shared with any other public agency.”

That meant it would not be shared with immigration, in particular, which “came up a lot”, or the police, or their employer.

These results were in contrast to the user research NHSX had been carrying out to that point through its normal mechanisms, using market research companies, which said by June “people were really happy with the term ‘track’”.

“Tracking people’s movements and people’s contacts was a good thing and people saw it as their civic duty to have their contacts traced,” she added. People said “they thought the government was doing really well and they had lots of trust in the NHS”.

NHSX’s research also pointed out where government communication efforts and social media output may be counter-productive.

Consistent messaging that BAME communities were at more risk from the virus meant some felt stigmatised as they seemed to be getting the blame for the spread of the virus.

“People are experiencing increased levels of racism from particular communities as they are seen as the ones, as ‘this is our fault because we have high risk and we’re the ones spreading it to other communities’,” Ms Papain explained.

The NHS had thought it needed a more diverse array of characters in its messaging, she said. “We’re thinking ‘well we need more black and brown people in the communications’” but the research showed people felt this perpetuated the narrative that migrants or BAME communities are to blame for the spreading virus.