Data Privacy Guest Post Innovation MyData blog: Personal data innovation: sharing power to build trust

The first in a new series of blogs exploring the guiding beliefs and motivations of some of the people in the MyData movement, who are working passionately with a common aim of empowering individuals to do more with their data

MYDATA GUEST BLOG: Alex Bowyer PhD Researcher, Newcastle University

Personal data use today is built on an imbalance of power, with public and private sector organisations storing and using our personal data – yet we have no visibility over that information or how it is used. We are forced to trust these organisations will use our data in ways we would consent to, yet it is hard for us to check if they are.

For Alex Bowyer, exploring this fundamental inequality is the focus of his work and research.

He is now in the third year of a PhD at Open Lab, a multi-disciplinary research group at Newcastle University which specialises in Digital Civics – working with communities to explore how technology and information systems can improve their lives and workplaces.

His PhD “is looking at power and the way in which, if data is held by companies and organisations about us, out of our sight and out of our control, then it becomes a proxy for our involvement in decision-making.” This, of course, impacts our ability to have a say on whether that data is actually correct, and upon how things happen that could affect our lives.

He said:  “A lot of this is about trust: you can’t really trust an organisation that is holding data about you and not letting you see it or even telling you that they have it. If organisations were to include people in the stewardship of their own data, they would actually earn more trust from their users.”

Data as power

Alex is trying to find out what new capabilities and data interactions people need to exert and maintain power in their everyday lives. In collaboration with Connected Health Cities and their SILVER project, he has been working with families in “Early Help” programmes who see social workers because they’re at risk of unemployment, crime, debt or other issues.

These support workers have access to all sorts of data – including criminal records, benefits information and school reports – but the families themselves can’t see or access that data. After running a series of workshops, he found there was a huge desire from families to know more about what was stored and how it was used, while staff wanted to see more data to build a complete picture of each family.

Alex has developed a model “to try and bring those two world views together” called shared data interaction, where the data record is seen as a shared resource that is built up, managed and checked together with both support worker and family member present. This is likely to result in more accurate information (because the family can quickly notice mistakes and correct them), will ensure ongoing family consent, and should result in better decisions based on better data.

The battleground of data

His next research project is a study on the data that companies hold about people, where Alex is going to guide people through the process of recovering their own data, using the EU’s General Data Protection Regulation (GDPR), and then explore how they make sense of that data and what it means to them. Part of this will involve a group design workshop exploring the different roles and motivations of the various parties involved in today’s “battleground of data”.

The key challenge he – and all of us— are working with is that today’s digital world today is built upon the idea that we get content for free in exchange for handing over our data, as opposed to the human-centric MyData model that seeks to empower individuals with their own data. But he sees, too, opportunities for businesses, not least in having less liability for looking after data.

He added: “I wouldn’t go as far as to say I’m optimistic, because I still think the world is wired against what needs to happen, but I want to be part of the change of trying to make it happen, even despite the challenges.”

He said a key problem is that there is “no one place where you can manage your digital life”, and we need to move to a world where people are able to manage it themselves. As part of this, he is interested in “new types of interfaces which make a very complex digital landscape manageable”, and he believes personal data lockers or libraries (such as have an important role to play in handing people back control of their digital lives.

He was delighted to discover the MyData movement earlier this year – “it puts a name and a cohesion and a community to what I’ve been thinking about for ten years or more” and said he was “absolutely inspired” by everyone he met at September’s global conference in Helsinki, coming away with some solid plans for collaboration and access to new transparency tools he didn’t previously know existed.

In terms of the future, he wants to continue to shape the design of products and services, not just as a developer (he has a background in software engineering) but also by remaining connected to users through grassroots research that demands more of service providers and pushes the boundaries of what is possible in pursuit of an easier digital life for us all.

Alex-picAlex is looking for companies who store personal data and are interested in the idea of involving users in looking after their own data to take part in his upcoming study. You can contact him on Twitter (@alexbfree) or through his website, which also showcases his research interests, published works, and writing including this excellent essay, “We deserve the time and space to be human” written for The Future We Deserve essay collection.

Please share this blog with others you think would find it interesting to help build a more human-centric digital world.

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