Data & Trust: Will migrants use the NHS app?
A fortnight ago, the NHSX Covid-19 App was launched across England and Wales following the many concerns raised by civil society and privacy advocates including Open Rights Group (ORG) both collectively and individually regarding privacy and security. We acknowledge the app now offers better privacy but concerns remain for the wider Test and Trace programme, such as how pubs are collecting and storing the data of those who do not use the app. We are continuing to put pressure on the Government to address these remaining concerns specifically to “clarify how people’s private data will be kept safe and secure under the new Test and Trace regulations.”
Earlier this year, ORG identified and detailed the key concerns regarding the app. These included: dissatisfaction with the risk assessment conducted by the Government; lack of confidence in Government’s claims that the app would not identify users and interfere with their liberties; that users rights could be limited; and an inaccurate description of anonymisation leaving space for ambiguities. There were also many questions left unanswered.
As part of our work, we have also looked at concerns regarding the app in relation to migrants and refugees. The pandemic has laid bare and exacerbated long-existing structural inequalities. This can be seen in how it has disproportionately impacted those from BAME communities which includes migrants, refugees and asylum seekers. Migrants, refugees and asylum seekers already represent one of the most marginalised and vulnerable groups in society and the COVID-19 pandemic has made the vulnerabilities they face more acute.
In our earlier blog posts, we identified the main concerns with the app relating to migrants and refugees as being the interaction with the Hostile Environment, data sharing and NHS charging. The Hostile Environment which came into existence in 2012 has continued throughout the pandemic despite calls for it to be suspended. In March this year, the British Medical Journal argued that for contact tracing to work the Hostile Environment needs to end. Data sharing agreements between Government departments were introduced as part of the hostile environment for immigration enforcement purposes and have already had negative health consequences for migrants and refugees deterring them from seeking healthcare – a fundamental human right – for fear of arrest, deportation or detention.
We also wrote about another consequence of data sharing which has been the complete erosion of trust in public services especially in the healthcare system as well as the undermining of the principle of universal healthcare. Instead of removing barriers to health care, the Government has placed additional barriers to migrants and refugees accessing care at a time when it is needed the most which in turn poses a threat to public health. The effect of the Hostile Environment policy means that despite the NHSX application not releasing any personal data, some communities may struggle to set aside their concerns and adopt the application. This is the fault of the Government and the years of hostility they have shown to migrant communities, and they should seek to respond to this by listening to communities concerns, not planning more flights to remove migrants who have fled poverty and persecution and risked everything to cross the Channel.
Other challenges may be the lack of access to smartphones by migrants and refugees. At our event ‘COVID Apps: Success or Failure’ last week, it was highlighted that the app isn’t compatible with every operating system so even if an individual owns a smartphone unless it was built in or after 2015 they will not be able to download and use the app. Although the app is not compulsory, its effectiveness according to the University of Oxford’s Big Data Institute depends on around 80 per cent of smartphone owners downloading and using it. Prior to the launch of the app last week, organisations were being encouraged to promote it in their venues. So far, it has been downloaded more than 10 million times. However, the success of the app also requires a high level of public confidence and trust.
The main issue raised regarding the app was that it would use a centralised contact matching system making it highly invasive. This has been abandoned in favour of the Google/Apple framework which adopts a decentralised approach meaning that your location data and other users you’ve been close to stays on your phone cannot be accessed by another individual and is not sent to a central server. However, by creating a culture of fear and mistrust in the authorities and public services and refusing to end the Hostile Environment the Government has undermined its own efforts to protect public health. This is not going to go away just because some of the privacy and security concerns with the app have been addressed. Sadly, it means that those migrants and refugees with access to smartphones will continue to be reluctant to use the app.
In our consultation with 30 organisations to identify the needs and capacity of organisations in the sector to challenge issues around data privacy and protection, 57% of respondents identified disproportionate data sharing as a key concern citing the NHS-Home Office data sharing agreement as an example. This agreement has undoubtedly had a detrimental effect on migrants’ trust in the Government and therefore a serious effort must be made to rebuild this trust. At a recent IPPR event which addressed the issue of data sharing, both the Latin American Women’s Rights Service and Liberty argued that Government agencies should push back against data sharing between different departments. They also advocated for a firewall and for discussion about the different firewalls needed. In order to protect the health and safeguard the rights of migrants and encourage migrants to engage with the app it is vital that the Government listens and acts on these recommendations.