Contribution signée Anne-Mieke Vandamme (KU Leuven)

Background or/rationale

As a transdisciplinary team, the “Coronavirus Pandemic Preparedness” team (https://rega.kuleuven.be/if/coronavirus_challenge) has carefully drafted an opinion regarding the use of contact tracing apps. The procedure followed is however also useful for other aspects of the lockdown exit strategy, and we list here the aspects that are especially relevant for the contact tracing app, while encouraging a similar debate for the entirety of the planned measures.

When Belgium begins to exit the lockdown and take measures to ensure public well-being, contact tracing will likely play a role in how the country navigates its way through the spread of COVID-19. Big data technology offers the opportunity to conduct contact tracing (as needed for epidemic control) through the usage of smartphone apps. Our transdisciplinary team–formed to learn from the current pandemic to better prepare for a future pandemic–has outlined the critical factors that should play a role in shaping the decision about whether to use an app (see https://rega.kuleuven.be/if/tracing-tools-for-pandemics). Here we leverage that analysis to highlight how the specific situation of contact tracing apps could complicate the exit process, because they introduce 1) the need for an even more active relationship between the government and the public and 2) the potentially lasting shifts in human behavior and social relations.

The government’s relationship with the public will evolve based on the way in which it determines whether contact tracing will be done (in part) via an app, how the app is rolled out, and whether or how a human stays in the loop (see Human-in-the-loop (HITL) vs HOTL discussion). Although an app in China and South Korea was believed (but not proven) to have helped control and reduce the burden of infection, it cannot be simply implemented in the same way in other countries, given the governmental, socio-demographical and cultural differences. In China, app usage for the coronavirus outbreak was obligatory, and it enabled government surveillance, a practice that would be severely scrutinized in most Western countries. Although Belgium could launch an app that is voluntary and more sensitive to privacy, it would still need to focus on increasing app usage (in order to increase the ability of the app to trace contacts) and managing public perceptions/concerns. This will require an even closer and more thoughtful relationship between the government and public. Moreover, this comes on top of other government measures and communications that may be under way at the sametime.

Although it may contribute to epidemic control (pending a proper epidemiological evaluation), the usage of an app could also create unintended shifts in human behavior and leave a lasting impact on society, even after the pandemic recedes. For example, containment or mitigation measures require individuals to accept personal responsibility for changing their behavior. However, when an app is used, the responsibility for the success of these measures may be perceived to shift from the individual to the government. In another example, people who do not receive an app notification to get tested might pick up a false sense of security and safety, potentially leading them to take risky actions that could increase cases of infection. And those who do receive an app notification might not readily come forward for testing but rather might react in one of several negative ways: aggressively demanding to get tested, panicking, keeping silent out of fear of being quarantined or stigmatized, discriminating against those they’ve been in contact with, etc. Finally, some people may intentionally avoid the app (for a number of reasons), which could negatively influence those who are open to using the app. These examples suggest potentially questionable changes to personal well-being and social relationships, at a time that is already precarious for many people and in many domains of life.

Concerns and risk factors

The government’s ability to successfully navigate these complexities will be largely determined by the extent to which it understands what an app may mean to various stakeholders (e.g., what does it take for different stakeholders to accept/use the app appropriately? how can vulnerable groups be reached and supported? how can the app be designed to be provide direct benefits to the user like health education or telehealth?).

What is at stake here–when it comes to a contact tracing app being implemented as Belgium exits the lockdown and navigates the coming months–is not simply the success of the government’s public health efforts and investment in an app. Personal trust, public trust and social trust are also at stake.

Personal trust (between government and individual) is at risk if

• Individual, context-dependent, health seeking behavior is affecting the proper use of the app. These risks can be addressed through active measures (like supporting people financially in app costs and use,…), proper information campaigns and human intermediaries.

Public trust (between government and public) is at risk if

• There is lack of inclusion of all stakeholders, especially vulnerable groups, in terms of representation (seat at the table) and voice (ability to speak and be heard).
• There are ethical, privacy and data protection issues.

These risks can be addressed through stakeholder engagement, grassroots efforts/platform to connect with vulnerable populations, and making privacy, data protection and transparency a priority.

Social trust (between members of society) is at risk if

• The design of the app is not human-centered.
• There is a lack of understanding of the diversity of stakeholders.
• The government does not seriously consider why people would not use the app (e.g. it’s not cool, it’s scary, it’s overwhelming, it’s cumbersome, etc.).

These risks can be addressed through stakeholder involvement in the design process, through local support for the launch, through media providing people with more perspective and addressing their concerns, etc.

Conclusion

As a “Coronavirus Pandemic Preparedness” team, we strongly believe that the lockdown exit strategy is the time to engage in multi-stakeholder interaction, taking into account the complexity of the situation,and build a vision for the future. As an example, contact tracing apps could be implemented even though they are not proven to work, if only for the sake of learning whether they work, how to properly use them, and how to mitigate unexpected consequences. However, this requires a transparency in the relation between government and public to convey what can and cannot be promised, and setting up the stakeholder interaction as explained above.

Recommendations

While there may not be time now to properly set up a stakeholder engagement to make decisions for the current pandemic, we need to set up this engagement now if only to learn for the future. Here are some suggestions:

• Stakeholder engagement in deliberation and decision-making….
• Engage stakeholders from Day 1.
• Develop a stakeholder platform.
• Organize continuous feedback from stakeholders.
• Phased rollout of the apps, with the first phase being a pilot that precedes rollout to the entire population. The pilot can be limited to a select group of users who have been engaged specifically to help in the contact tracing design process.
• A thorough deliberative process will arguably hinder rapid launching of the numerous innovative, contact tracing apps currently being developed for the COVID-19 pandemic emergency. However, it could also minimize the potential risks for the current situation and enable quicker decision-making for future pandemics.
• Support a grassroots (i.e. local) approach to connecting with vulnerable, less visible, or less accessible groups. Confirm privacy and data protection as a priority.
• Engage in this discussion with transparency of what can be achieved now and why we still do it despite the limited immediate benefit, as we need to set this in place for the future.
• Engage the media to help with the proper messaging and stakeholder interaction.