24th April 2022
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Why It Matters That My Data Belongs To Me
I’ve been thinking a lot about data recently. Sometimes in the most unusual places. Last week I had the unfortunate need to spend 30 minutes inside the sarcophagus of an MRI scanner. It’s strange what goes through your mind when you’re under stress. As it chuntered away (what is it doing to make so much noise?) I began thinking about the massive amount of data that it must be generating, the software systems controlling it, and the procedures in place for managing, sharing, and protecting the personal information being produced. These life-saving images of the inside of my body must be the most personal kind of data you can imagine. Surely, they belong to me, don’t they?
Uncovering Your Personal Data
Much has been written about the problems associated with the collection and sharing of personal data. Two aspects of this topic have received most of the attention.
The first concerns the amount of personal data that is collected by the Big Tech companies that we use for most of our online activities. As we know, each online interaction leaves a digital footprint that tells a story of where we’ve been, who we’ve been with, what we’ve seen, and how we acted. Such information is then used by these companies to do two important things: Figure out why we were there and predict what we might do next. This is used to target advertisements, news stories, product purchases, and so on.
The key observation here, of course, is just how much data about us is recorded and whether we are aware that it is being used in this way. For example, lets take the case of Meta (Facebook) and Google. Recent investigations have highlighted just how much data they have on those using their services and how they use it. Try for yourself to see the map of where Google thinks you have been recently and see what you think. In my case this reported 733 places over the past 9 years. Many that I’d forgotten I’d been!
The second aspect of interest is the difficulty finding out what personal data companies have collected and what they do with it. This has been a concern for many years and has led to numerous public debates, emerging public bodies such as the Open Data Institute (ODI), and Government data protection regulations such as the General Data Protection Regulation (GDPR). However, in practice this issue remains challenging.
In theory, getting hold of your personal data should simply be a matter of asking for it. A recent investigation by journalists at the New York Times put this to the test. They asked a UK and US based journalist to each make formal requests to obtain their data from Big Tech companies, banks, utility providers, and mobile phone companies. Not only were the processes quite different depending on jurisdiction, the responses (if they got one) were frequently weak and incomplete.
Back to Basics
This not how it was supposed to be. The initial goals of the Internet and WWW pioneers was to open up research and information sharing across borders. I still clearly recall as a PhD student in Computer Science in the late 1980s how difficult it was to connect with remote colleagues, share research ideas, and find the latest published papers. The progress in ease of communication by the 1990s brought incredible excitement and spurred untold national and international research collaboration. From these roots, much more extensive data sharing and interaction has emerged.
Yet, the rapid deployment of the Internet has brought reliance on the WWW and a host of data-driven services. That success is a double-edged sword. On the one hand this has been the enabler for an emerging digital economy. On the other hand, the Internet has become a battleground for the management and control of data, particularly personal data.
Such concerns have led the original founder of the WWW, Sir Tim Berners-Lee to believe that Big Tech companies have too much power and control over data and have led the Internet astray. He is now focused on reinventing the WWW based on a new paradigm, expressed by Irene Ng and her team as “my data belongs to me”. From this view, individuals need to take back power from the big tech giants by recognizing that data is a currency. The Internet can support a new market in data to be created in which each of us can actively participate.
You Are Being Watched
The exploitation of this data has many dangerous consequences, including what Shoshana Zuboff calls “The Age of Surveillance Capitalism”. Zuboff discusses many different concepts and ideas throughout the book. But for me she is at her strongest when shining a light on the strategic concepts that underlie the seemingly aimless gathering and use of large pools of data by platform companies such as Google, Amazon, Facebook, and the like. Significant is her discussion of how the initial goals and aims of these platforms has moved from supporting society by “democratizing information” toward not just selling our data back to us in new forms, but also commodifying that data to allow other agents (commercial and otherwise) to manipulate, coerce, and direct our behaviours to achieve their aims. Behind this lie 3 fundamental strategies exploited by Big Tech as a consequence of digitization:
- Economies of scale that allow vast amounts of information to be collected, analyzed, and merged as the raw material for pattern matching.
- Economies of scope which bring variety to the data by extending the reach of what is used by collecting data across a range of activities and by deepening the predictive detail in each activity.
- Economies of action that go beyond capturing, analyzing and predicting behaviour to drive interventions to shape behaviour and change outcomes.
It is this combination of strategies, Zuboff believes, that moves the commercial ventures of Google, Apple, Amazon, and Facebook away from their initial information insights aimed at supporting human endeavours and into the murkier waters of exploitative activities that treat human behaviour as an exploitable commodity used as input for algorithms that predict and coerce future actions. For Zuboff these are the inevitable consequences of surveillance capitalism.
Be Careful Out There
All around us, our personal data is being collected all the time. Our online actions and activities are being recorded, correlated, shared, and mined. But if this data is about me, then surely I should know what data is held and how it is being used? And more importantly, I should get meaningful answers when I ask for it back. Unfortunately, in an increasingly digital world this is not so easy.
A few days after my scan I returned to the hospital to be shown the MRI images and discuss the results (all good!). The consultant shared her screen and walked me through the strange labyrinth of my internal organs. As she finished, I asked “can I get a copy of all this data please? After all, my data belongs to me, right?”. There was a stony silence.
Digital Economy Tidbits
A Digital Renaissance? Health innovation shifts to the micro. Link.
A fascinating review from The Economist looking at innovation trends in the healthcare sector.
A linguistic analysis of medical research by Economist Impact finds that biomedical innovation peaked in the 1970s, with key emerging concepts including imaging, with fewer revolutionary advances in underlying scientific research since then.
However, a convergence of technologies—including machine learning and computational biology—promises to reverse the trend. Our analysis of the patent literature shows a pick-up in commercial innovation, especially through the development of innovations built upon data, bioinformatics, and digital health.
Success and Failure at Pebble. Link.
A really excellent case study on twin aspects of success and failure at a startup and why scaling up killed them. The Pebble smartwatch was “big news” and had a major impact on a new category of products. This frank and honest review of what happened is compelling reading. It has many lessons for innovators, entrepreneurs, digital transformation advisors, and educators.
I’ve been giving a talk on the importance of learning from failure to every YC batch for last few years. I wrote this post in 2017 but never published it. I dusted it off for the 10 year anniversary of Pebble’s launch on Kickstarter.