Health data and COVID-19 technologies

The context

Health and social care were at the frontline of the response to the COVID-19 pandemic, which saw a rapid acceleration of the use of data-driven infrastructures and technologies: from dashboards enabling the prediction of healthcare demand and risk scores that prioritise vaccine rollouts, through to the adoption of digital contact tracing tools and vaccine certification.

Debate about the appropriate use and impact of these technologies continues, encompassing a range of societal and ethical questions related to data governance, privacy, power and inequalities. The disparate impact of the pandemic on people suffering from social and health inequalities has seen parallels in an emerging ‘data divide’ between how people are reflected in, and benefit from data-driven approaches. Asymmetries of power have also emerged in the way health data is governed and collected for the longer term.

Beyond the COVID-19 pandemic, there has been much excitement about the potential for new health–data applications and data-driven technologies to drive a post-pandemic overhaul of health systems, and to create resilience against (and even prevent) the next pandemic. But there are still many unanswered questions about the impact and legacy of data-driven responses to the pandemic, and in particular how their roll-out affected existing societal inequalities and disadvantage. These include:

• What is the long-term legacy of health data and technologies, beyond the pandemic? 
• What impact has the use of data in the pandemic had on society, and specifically, inequalities? 
• How can technologists and policymakers prepare themselves for future crises, and what tools do they require to do so? 

• How can technologists, policymakers and other actors in the ecosystem steward data in a trustworthy way and for public benefit – in a pandemic and beyond? 

Ada’s approach

We research the datafication of health and the increasing use of data-driven technologies in the health and social-care system, accelerated by the COVID-19 pandemic. During the pandemic, we tracked the rollout of data-driven systems, responding to the rapidly evolving landscape in terms of policy, practice and public attitudes. Our aim is to assess and document the immediate and long-term impacts of COVID-19 technologies on the healthcare system, on patients and on inequalities.

Our work gathers evidence using different methodological approaches such as surveys, expert workshops, public deliberation exercises and interviews with various stakeholders. Examples of these include:

Rapid-response research into specific, data-driven technologies during the COVID-19 pandemic

• In April 2020, the Ada Lovelace Institute published Exit through the App Store, a rapid evidence review that examined the technical, legal and societal implications of new COVID-19 technologies such as digital contact tracing apps.  
• In May 2021, we published Checkpoints for vaccine passports, the culmination of a year-long research project into the appropriate pre-conditions for vaccine certification systems.  

A two-year research inquiry into the impact of COVID-19 technologies on inequalities

In partnership with the Health Foundation, we have analysed the impact of data-driven systems on health and social care throughout the pandemic. Our work in this area is ongoing and aims to produce recommendations for how these systems can be designed and deployed in ways that mitigate their negative impacts and promote their benefits.

Trackers and monitors

Throughout the pandemic, we developed and maintained: 

• a global comparative resource tracking the roll-out of digital contact tracing apps
• an international monitor of vaccine passports
• a tracker of public attitudes research on COVID-19 technologies commissioned and undertaken by a range of organisations.

Our current work in this area focuses on the global legacy of digital contact tracing apps and vaccine passports.

Regional public engagement, citizen juries and deliberations to understand the public’s views and experiences

Public engagement is a core research methodology for this programme. We’ve conducted:

• public attitudes surveys to understand attitudes towards a range of technologies deployed during the COVID-19 pandemic for health outcomes, which resulted in The data divide,
• online public deliberations to explore attitudes to the use of COVID-19 technologies for transitioning out of lockdown, which resulted in Confidence in a crisis,
• a citizens’ jury on the role of good governance and the rule of law in building public trust in data-driven responses to public health emergencies, which resulted in The rule of trust.

Futures and foresight research on trends in health data

• In October 2020, we published The data will see you now, a report exploring the datafication of health and how it challenges existing practical, legal and conceptual definitions of what counts as ‘health data’.
• Our joint project with the Nuffield Council on Bioethics, AI and genomics futures, is currently exploring how AI is transforming the capabilities and practice of genomic science.

The impact we seek

Our Health data and COVID-19 technologies programme enables us to achieve our strategic goals in the following ways: 

• We have anticipated transformative innovations in the context of the COVID-19 pandemic by providing early guidance, and surfacing a range of technical, legal and societal implications of new and nascent technologies such as digital contact tracing apps and vaccine passports.
• We are interrogating inequalities caused by data and AI by centring much of our research on health data and data-driven technologies on their impact on health and social inequalities, and the lived experiences of people who suffer disadvantage and marginalisation.
• We are amplifying the voices of people through placing public attitudes and public engagement at the core of our understanding of the benefits and disadvantages of the datafication of health and of the pandemic response.
• We are promoting sustainable data stewardship by seeking to identify approaches and mechanisms for making the use of health data trustworthy and responsible, in the pandemic and beyond.
• We are creating space for diverse scholarship by partnering with a range of different organisations such as the Health Foundation and the Bingham Centre to bring an interdisciplinary lens to these issues.