Health and social care have been at the frontline of the response to the COVID-19 pandemic, which has seen the rapid acceleration of the use of data-driven infrastructures and technologies: from dashboardsf enabling the prediction of healthcare demand and risk scores that prioritise vaccine rollouts, through to the acceleration and adoption of digital contact tracing tools and vaccine certification.
Debate about the appropriate use and impact of these technologies has intensified, 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. We have also seen asymmetries of power emerge in the way health data is governed and collected for the longer term.
As we move into the late stages of the COVID-19 pandemic, there is 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 ameliorated or exacerbated 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?
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. We work in a responsive way to track the rollout of data-driven systems in response to the current pandemic, assessing and documenting their long-term legacy. We aim to understand the short- and long-term impacts of COVID-19 technologies on the healthcare system, patients and on inequalities.
Our work spans various approaches and 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, controversial applications 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 are undertaking a qualitative and quantitative analysis of the impact of data-driven systems on health and social care throughout the pandemic. With this research, we are seeking to infuse insights gained through this research into health and social care policymaking and practice in the United Kingdom and abroad.
Trackers and monitors
Throughout the pandemic, we’ve 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 actors.
Regional public engagement, citizen juries and public deliberations to understand the public’s views and experiences
Public engagement is a core research methodology for this programme. We’ve conducted attitudes surveys (resulting in The data divide), online public deliberations (resulting in Confidence in a crisis, and 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 (report forthcoming). In 2022 we will be undertaking regional public engagement activities to help understand the ways in which members of the public across different socioeconomic backgrounds, and with varying health status, have interacted with, been impacted by, and made sense of, various pandemic technologies.
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’.
- In 2022, we will work in collaboration with the Nuffield Council on Bioethics on a project to identify possible future trends in AI and genomics.
The impact we seek
Our Health data and COVID-19 tech 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.
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The role of good governance and the rule of law in building public trust in data-driven responses to public health emergencies
A citizen jury deliberation on the trustworthiness of data-driven technologies used in a public health emergency
An evidence review and expert deliberation of the practical and ethical issues around digital vaccine passports and COVID status apps
Rapid, online deliberation with 28 members of the public on COVID-19 exit strategies
Exploring how the datafication of health occurs and what consequences it has for people and society.
Research to examine the interaction between data-driven systems and health and social inequalities, in the wake of COVID-19
A resource for monitoring the development, uptake and efficacy of global attempts to utilise smartphones and other digital devices for contact tracing
A tracker collating developments in policy and practices around vaccine certification and COVID status apps as they emerge around the world
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Public attitudes to tackling social and health inequalities in the COVID-19 pandemic and beyond
Requirements that governments and developers will need to deliver in order for any vaccine passport system to deliver societal benefit
Our report has been influential in informing the policy response to using data-driven technologies to exit from COVID-19 emergency lockdown measures.
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Exploring the foundational premises for delivering ‘world-leading data protection standards’ that benefit people and achieve societal goals
The fourth in a series of public evidence events on vaccine passports and COVID status apps.
The third in a series of public evidence events on vaccine passports and COVID status apps.
The second in a series of public evidence events on vaccine passports and COVID status apps.
The first in a series of public evidence events on vaccine passports and COVID status apps.
What will be the enduring impact of the COVID-19 crisis on surveillance practices?
The third in our series of events addressing the nascent ‘public health identity’ systems developing around the world
The societal impacts of introducing a public health identity system: legal, social and ethical issues
The second in our series of events addressing the nascent ‘public health identity’ systems developing around the world.
The second of two events sharing what we learned from a rapid online deliberation project to explore public attitudes to COVID-19 exit strategies.
A summary of the third panel on the Ethics & Society stage at CogX 2020 - Day 1
Testing immunity certificates: do the new antibody tests open the door to the creation of a ‘public health identity’?
The first in our new series of virtual events addressing health identity systems developing in response to COVID-19.
Test, trace and trust: digital technologies and the COVID-19 response across the UK’s devolved nations
This is our third virtual event, exploring approaches of different nation states to using technology to control the spread of COVID-19.
This is our second virtual event, exploring approaches of different nation states to using technology to control the spread of COVID-19.
No silver bullet: how can the UK government use technologies to transition out of COVID-19 lockdown while protecting public health?
In the first in a series of webinars exploring the current questions raised by the COVID-19 global health crisis.
How can we achieve the ethical use of data-driven technologies to combat COVID-19?
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