Tom Sullivan | May 19, 2021
Contact tracing will be a controversial topic in post-pandemic assessments of what worked and what did not during the COVID-19 response. Americans, after all, place a high value on privacy. Yet it’s difficult to ignore successes nations with surveillance systems achieved when addressing the pandemic.
An NHS initiative in the U.K. using a framework Apple and Google introduced, in fact, offers a glimpse at the potential of digital epidemiology for battling outbreaks — and the results arrive at a time when America is facing the opportunity to rethink public health infrastructure.
“The [U.S.] public health infrastructure is very siloed. It’s a one-way reporting approach. This goes back decades,” said Micky Tripathi, who leads the U.S. Office of the National Coordinator for Health Information Technology. “We need to think at a high level about how public health infrastructure can be an ecosystem that many different parties are contributing to.”
Contact tracing, for instance, is becoming an increasingly integral aspect of a more resilient health care system in the U.S. and other nations as the world looks beyond the chaos wrought by COVID-19 and toward a post-pandemic future.
Encouraging research results in the U.K.
Researchers tracked utilization of the NHS COVID-19 App in England and Wales beginning September 24, 2020 through the end of December. Some 16.5 million users, or 28 percent of the population, used the app, which sent 1.7 million exposure notifications.
“Our study found that the intervention, with nearly 30 percent uptake in the population, reduced the second wave by roughly a quarter,” says Christophe Fraser, a Senior Group Leader in Pathogen Dynamics at the Big Data Institute at the University of Oxford, Professor in the Nuffield Department of Medicine and an author of the report The epidemiological impact of the NHS COVID-19 App. “What surprised us was the strength and robustness of the signal and I think we have increasing evidence that digital tools are very powerful.”
Is what the NHS created a perfect solution? No. But it is evidence that a digital toolbox comprising contact tracing apps, rapid testing and effective data sharing can work as a critical piece of future digital epidemiology efforts.
“Together with earlier and more preliminary results from Switzerland and Spain, these results indicate that we have a functioning digital and privacy-preserving system that can make an enormous contribution in fighting this and other pandemics,” said Marcel Salathé, who leads the Digital Epidemiology Lab at EPFL in Lausanne, Switzerland. “One can imagine how impactful the system could be if 80 percent of people used it. It is hard to imagine another measure with that level of impact and such low personal inconvenience.”
Christophe Fraser, Big Data Institute at the University of Oxford
Core considerations of a contact tracing system
As in so many instances, technology alone is not adequate — it must be integrated with care delivery models. That integration will require transparency, a privacy-by-design mindset, clear consent protocols and, ultimately, consultation and collaboration among public health and the broader population.
“The preservation of freedom and open democracy means we need to do this in a privacy preserving way,” Fraser said, adding that the user population expressed less concern about privacy than whether they could trust the message the app was delivering when telling people to isolate.
Transparency, of course, is an important concern relative to patient privacy. Google, in fact, is facing a lawsuit in California by two plaintiffs who allege the company is exposing users’ personal information to third parties through the same COVID-19 exposure notification system the tech giant developed with Apple. The plaintiffs claim the system makes it possible to link diagnoses back to individuals. Google countered that the system preserves privacy by enabling public health entities while Google and Apple cannot see individual’s identity. That illustrates how complex data ownership matters can be in general and specifically when it comes to contact tracing.
In mid-2020, the Social Science Research Council (SSRC) formed the Public Health, Surveillance and Human Rights Network to enable societies to better prepare for future crises. To that extent, the group of multi-national, cross-disciplinary experts produced the report Surveillance and the New Normal of COVID-19: Public Health, Data and Justice.
“Governments have a responsibility to make clear the intentions for the collection and use of data, as well as plans for use and handling of data beyond the crisis moment,” said SSRC Program Director Alexa Dietrich. Such responsibility is not limited to government. Technology vendors, health systems, health plans and third parties all need to be transparent about any data collected and the intentions for using it now and in the future. That work begins with appropriate discussions about preserving patient privacy.
Fraser noted that “privacy is a gateway” to ensuring consent is an individual’s choice and research has shown that strong population engagement can be achieved when digital tools are created with a privacy-by-design mindset driven by consent.
“Given our limited understanding of COVID-19 initially, a system that was less private would have given more flexibility to learn about transmission, but this system was developed with Google and Apple in a way that is privacy preserving,” Fraser said. “A year later we’ve landed in the right place in terms of privacy tied with consent.”
In addition to consent, privacy protocols must strictly determine what data can and cannot be collected. That might sound simple but considering that U.S. privacy rules and regulations are primarily related to HIPAA, the digital landscape is challenging, to state it mildly, and considerable work remains for the full spectrum of health care organizations.
“We need to make sure we are not collecting more data than we need to achieve our desired outcome,” Dietrich said. “We also need mandatory expiration processes like sunset clauses to make sure data are not misused.”
Establishing transparency, designing for privacy and ensuring consent is clear to users essentially lay the foundation for earning buy-in from the private sector and overall population. When NHS initially undertook work to develop the COVID-19 App, for instance, no precedent existed to suggest that the population would or would not download and use it or that it would be effective if they did.
“This was a novel intervention. There were technical hurdles to be solved. The key to the success was integration of the technology and the health care — contact tracing apps with the notification system based on epidemiology,” Fraser said. “The unique challenge of COVID-19 is asymptomatic spread and people with very mild symptoms. You need to do something about people with mild symptoms at the point that they are infectious. The epidemiology was sound, the case was sound, the success was far from guaranteed.”
Fraser continued that linking the technology to care delivery was key because when something is seen as merely a technology product, uptake struggles among patient populations and public health. “This would not have worked if people involved in the testing and quarantine work did not have buy-in from public health,” Fraser said. “It wasn’t easy because plenty of people were skeptical.”
Regardless of geographical location, that reality is also true among under resourced populations, the very ones COVID-19 hit hardest in terms of infection rates, limited or lacking access to care and at times harsher social distancing enforcement measures, Dietrich said, adding that those areas also provide an opportunity to make substantive and lasting social change to improve public health.
“Socially responsible technology must be constructed through consultation and collaboration with the communities that are most impacted by this technology; technology must be designed from the beginning with the particular needs and contexts of different communities in mind, especially low-income communities and communities of color,” Dietrich added.
Maintaining COVID-19 ‘clarity of determination’ into the post-pandemic future
People have been thinking about digital health for a long time, but many of the technologies have only become mature to the point of usability and availability in the last few years.
“Digital epidemiology has a tremendous potential to solve public health problems,” said Salathé. Dietrich added: “We are at an inflection point right now, which creates an opportunity to rethink the way we collect and use data and maintain the balance between technology, public health, and our civil liberties.”
To achieve what Fraser described as a necessary “clarity of determination,” leaders must approach the future with realistic pandemic response goals to fend off the societal, economic, and health problems similar to those of 2020-2021. Likewise, the core elements of contact tracing systems are likely to evolve and nuances will manifest in the future. The above considerations form a foundation on which to build.
“If we really learned something during COVID-19, it’s that with the right determinations and set goals, the pandemic is responsive to what we do,” Fraser said. “From a systems perspective, we have all the tools but we need to change our mindset to adopt the idea of ‘no more pandemics’ and that will require societal buy in.”