Published: 27 May 2020

The UK is following nations across the world in turning to digital technologies to improve monitoring of the disease and increase the protection of citizens’ health. What are the implications of the app for medical research and the patients our members represent?

The basic premise of contact-tracing is simple: identify those who are infected, work out who they may have passed the virus to, and isolate those contacts to curb further transmission. Digital contact tracing using an app is a tool to aid manual tracing, one that could also reduce pre- and a-symptomatic spread, quickly notifying those who have been in close proximity to someone with symptoms.

NHSX’s app, currently being trialled for roll-out across England, is said to be an important part of the Government’s overall Covid strategy.

The app could bring significant benefit to health and society. As part of a package of measures, it could help reduce the spread of the disease, in turn alleviate pressure on the NHS and ultimately save lives. Furthermore, data collected in a centralised app could aid our understanding of the virus’ spread.

What are the implications for medical research?

Trust in the use of data for health and research is at stake here. If launched and managed well, in a way that the public feel their data and privacy is protected, the app could boost confidence in the use of data for health and may encourage more people to share their data for medical research.

Medical research can only flourish if people trust and understand the benefits of using health data. It is therefore vital that the app maintains and builds public confidence in health data use.

For this to happen, NHSX must:

• Provide comprehensive and easy to understand information about the app. It needs to be clearly communicated that the app is part of a wider Test and Trace strategy. The app is there to support those efforts, not to replace them.
• Give assurances about what exactly their data will and won’t be used for, who will have access to it, and whether the data will be kept after the pandemic. Privacy concerns highlighted in the media should be addressed directly. Furthermore, given the sensitivities around commercial access to personal data, communication about the roles of any private companies in the app needs to be explicit and forthright.
• Be honest about the likely effectiveness and accuracy of contract-tracing technologies. What learnings are there from the Isle of Wight trial? And what, if any, alterations have been made?
• Have clear processes in place to identify and mitigate limitations, as well as the app passing all necessary privacy, efficacy and security standards.

There are, of course, ethical concerns, for example in relation to privacy and data protection, along with questions over the accuracy of such technologies. Transparency, strong privacy guarantees and honest scrutiny from expert and trusted voices will be crucial in building public faith.

However, the app presents an opportunity - to show how data driven technology can be approached in an ethical and pragmatic way and could serve as a profound test case for future applications of technology in health.

Tailored advice for patients

As stated above, as part of a package of measures, the app could help to manage and reduce the spread of the virus – which will be positive for patients and the public alike. There must be comprehensive and easy to understand information about the app provided for all. The Government must also offer clear and tailored advice for vulnerable or shielding individuals. What will the app mean for those vulnerable or shielding? Should they, their families and carers be encouraged to use the app?

The app must not increase inequalities

Additionally, against the backdrop of emerging evidence that Covid-19 disproportionately affects certain groups, the app must not increase health or digital inequalities. Steps must be taken to ensure the technology reaches people at greater risk, encouraging uptake in those groups and ensuring the app is used by groups most severely affected.

A contact-tracing service must be accessible to all, with alternatives available to those unable to use a smartphone. Emphasis must be placed on ensuring all can easily use the app – including those with visual impairments, communication difficulties, or who speak community languages rather than English.

Intelligence from local authorities will be also important in tailoring the approach in particular communities, thereby reducing the burden on disadvantaged groups.

Data-driven technologies can save lives during the Covid crisis and potentially support our route out of lockdown. But their success will be dependent on sustaining widespread public trust and confidence, for which transparency and open communication from the government are absolutely vital. Our sector must ensure that any initiative strengthens public confidence in the use of health technologies, rather than weakening it. 

Thanks to NCRI Consumer Forum for their input.