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Should we consider the environmental and social impacts of the health data we collect?

Dr Gabrielle Samuel

Senior Research Fellow

06 April 2023

Health

As part of her outreach activities, Dr Gabrielle Samuel explored the impact of data-driven health research at the Southampton Science Festival. She shares about her interactions with festival attendees and how they helped her to explore the questions at hand.

In 2022, I joined a team of scientists and researchers exhibiting at the Southampton Science Festival. My stand, titled 'Test your digital sustain-ability', explored the sustainability of data-driven health research, and asked two questions:

Will collecting ever more health data always improve health outcomes, and when might it not?
How should we consider the environmental and social impacts that come from collecting and analysing ever more data, and whose responsibility is it?

My stall at Southampton Science Festival.

The impact of collecting health data

To explore the question of whether collecting ever more health data always improves health outcomes, I presented festival attendees with two future scenarios.

The scenarios were:

Imagine a future where tech makes a positive difference to long-term health comes. Your smart toilet checks your urine and poo daily to check for specific diseases including cancer. Your mental health is monitored by tracking your digital activity and looking for changes, for example, in your social media, exercise, sleep or movement. Your smart watch alerts you about the air quality around you – both inside and outside your home. As a result of all of this monitoring, you live a longer, healthier life.
Imagine a future where tech makes little difference to long-term health outcomes. Your toilet says you might have cancer markers in your poo, but your local hospital doesn't have the infrastructure to provide the latest cancer treatments. You can monitor your mental health but the apps don't give you the support you need and you have no way of seeking health, as there aren't enough healthcare professionals. You can monitor the air quality around you using an app, which says there are specific particles in the air and according to a generic profile, the apps puts at an increased risk of getting cancer. As they are within allowed standards, you can't get the tests you might need. As a result, despite all this monitoring, it doesn't result in a healthier life.

I asked the attendees to vote on which one they thought was a more realistic option. We then discussed the topic and they wrote down their thoughts on their choices. They noted the benefits and risks associated with digital innovation, plus the need to design technology to achieve an equal society and not just to make "better" technology, among many things.

I'm conflicted about what I want and what I imagine the future might look like. Thoughts: 1) there are current inequalities; 2) we should take our own responsibility for certain aspects of health; 3) there is harm in relying on digital information, not your own understanding of your body!– Reflections from festival attendee A

It’s difficult as there are so many inequalities with the focus very much on the here and now, and not the consequences. There will never be an even benefit BUT technological advances here have been proven to be beneficial – you could think about technology and medicine, for example, we’re always learning, and if we can dilute the negatives I believe the positives are stronger in the long run.– Reflections from festival attendee B

The reason for the emergence of high tech products is to achieve a more harmonious and equal/society, not that certain technology can achieve better. Must be able to benefit everyone.– Reflections from festival attendee C

Props developed by the Liminal Space.

Considering the environmental and social impacts

To help engage festival attendees with questions around the environmental, health and societal impacts that come from collecting and analysing ever more data, we introduced some of the environmental and health impacts associated with collecting data. To do this, I used a poster board to display some facts about the environmental sustainability of data-driven technologies.

I asked attendees to reflect on some of these complexities, as well as questions associated with the environmental and social impacts, using props, prompt cards and posters.

The environmental sustainability of digital societies poster

This poster, titled "The Environmental Sustainability of Digital Societies", highlights the environmental impacts of digital technologies along with the complexities associated with addressing them. It was co-developed by my collaborator and me, as part of a British Academy Award.

The cigarette packets display images designed to push smokers to be responsible for their own health outcomes. This prop takes its inspiration from health warnings on cigarette packets. It raises the question of whether, as digital consumers, we could or should be responsible for the health outcomes of those associated with digital technologies’ (phones, computers, servers that process data, etc.) manufacture and disposal.