The data dilemma: how much does my toaster know about me?

In September 2019, VOICE, an international network of patients, carers and the general public with a shared interest in helping shape the direction of research into healthy ageing, organised a workshop in Newcastle with the topic, ‘How much does my toaster know about me?’

The event was co-sponsored by Pitch-In to support the development of the ‘IoT for care – awareness-raising workshop programme’ which is looking to raise awareness of the capabilities and potential of IoT for care applications. Around 60 participants attended, members of the public from all walks of life, and all clearly intrigued by the title.

After an introduction by Professor Lynne Corner, representing both VOICE and the National Innovation Centre for Ageing, based in Newcastle, a series of invited speakers discussed different aspects of IoT, data and health. Professor David Kirk from Newcastle University discussed his research team’s approaches to ‘democratising’ (and domesticating) IoT through encouraging people to make and adapt their own devices.

Dr Alex Cole, from the Centre for Process Innovation Limited, talked about how data is changing the way that they think about healthcare service provision and the creation of business supply chains.

Scott Stainton, a PhD candidate at Newcastle and entrepreneur behind start-up Neura Technologies, performed the high-wire act of discussing AI and deep learning at the same time as giving a live demonstration of training an AI to recognise toasters!

Dr Stephen Potter, from CATCH at the University of Sheffield, and representing the Pitch-In project, tackled head-on some of the issues raised directly by the use of data in and around healthcare.

The final invited speaker was Alistair Wilson, of the Dementia Advice Centre Newcastle, who discussed the range of services and support that the Centre offers to people with dementia and their carers, including some of the domestic technology which the Centre can help people to select and use.

After patiently listening to the speakers, it was time for the rest of the participants in the workshop to have their say, with a group session intended to bring out their hopes – and fears – for an imagined, digitally connected, future village. And, as might be expected, the discussion identified a wide range of both potential benefits of and possible downsides to extending the reach of IoT and data technologies further into our everyday lives.

“Positive themes centred around community building, shared income, health monitoring, innovation and sustainability.”

The positive themes included the opportunities for building local social networks, engendering community spirit and a sense of belonging, and even greater inter-generational cohesion; for generating shared income for the community through realising the value of its collective data; for real-time monitoring of health; for providing a test-bed for innovation around products and services, allowing the members of the community to become more active participants in research and development; for addressing sustainability, by, for instance, monitoring energy usage across the community; and for providing lifelong learning resources.

“Worries included unscrupulous advertising, data security and trust, community conflict, control of data, and the opacity of data collection and use.”

Among the more negative or worrying aspects that people could foresee were concerns of becoming prey to targeted advertising of unneeded goods and services; fears around the security of their data, with data breaches leading to fraud or worse, and the need to have trust in those collecting the data; the possibility of community conflict arising from dissenters who don’t want to share their data disturbing the wider consensus; the need for appropriate mechanisms for asserting control over their data and restricting access to it; and around the general opacity of data collection, about ownership of data, and how and when it will be used, and by whom.

“People are willing to engage with ideas around IoT and can see the benefits, but there are also serious and valid concerns about the direction of travel.”

In summary, the event demonstrated that people are interested in and are willing to engage with ideas around IoT and data technologies, and can see the potential benefits for their health and wellbeing, and for wider society; but also that there are serious and valid concerns about the direction in which much of this technology seems headed, which raise questions of control, trust and assent.

Technology providers should pay heed to the demands for more transparency about their means and motives, as well as seizing the opportunities that exist for including the public in their research and development processes.

Many thanks go to Catherine Butcher, EIT/VOICE project manager and her team for organising such a rewarding event. The event was co-sponsored by the Pitch-In and EIT Health network. EIT Health brings together a range of organisations across Europe with the shared aims of promoting citizens’ health, strengthening healthcare systems and developing a sustainable health economy. It is supported by the European Institute of Technology, an independent body of the EU.