Boundaries of health data

Project background

From wearable tech and mobile apps to loyalty cards and online behaviour, data gathered from almost every aspect of people’s digital lives increasingly yields insights about health.

This is the ‘datafication’ of health, and it has profound consequences for who can access and use data about health, how we practically and legally define ‘health data’, and on our relationship with our own wellbeing and our healthcare system.

The ethical and societal questions surrounding the use of health data for research, innovation and care are a well-studied field of research. The rapid expansion in the digitisation of health data, and in how and where health data can be gathered and used, means these questions are even more urgent.

Project overview

The datafication of health remains a topic that is not yet comprehensively understood.

Our report, The data will see you now, aims to address that gap by:

• synthesising research literature to surface and address social and ethical questions raised by the datafication of health
• convening experts from different fields to build foundations for future research
• developing approaches to and advocating for the responsible use of data to improve health.

The report explores the datafication of health, how it manifests and what consequences it has for people and society. We put forward evidence that everyone may now live in an ‘Internet of Health’ and posed 12 social and ethical questions that policymakers, researchers, innovators and health professionals must consider if we are to unlock the full benefit of health data while empowering individuals and communities.

We will build on this work by convening workshops, contributing to external initiatives and supporting debate and research which ensures the datafication of health works for people and society.