Data Portability for the Benefit of Society - Health, Environment and Beyond
My name is Yara Khazindar, and I am a summer intern at DTI and a third-year law student at the University of Reading. I am grateful for this opportunity which has opened my eyes to the world of data policy and the tremendous real-world positive change it can deliver.
In my short time at DTI, my primary focus has been on the potential for data portability to address major societal problems. In this newsletter, I highlight some emerging use cases of data portability that I have examined to illustrate that it is more than just a user centered feature, it can benefit our society as a whole.
Data for Research
One of the most impactful ways data portability could benefit the public is through supporting ethical research in the fields of medicine, the environment, and human behavior to list a few. For example, in biomedical science, the sharing of data from health records, from fitness trackers and wearable tech can support research into diseases and improve trials for personalized medicine. In the field of disease diagnostics, researchers are increasingly seeking to link behavioral datasets to medical outcomes to identify opportunities for earlier diagnoses. However, researchers often face barriers accessing research participants’ data due to the cumbersome processes needed for individuals to manually download and share their data, fragmented consent rules, and uncertainty over how data can be reused across borders. Data portability tools can reduce this friction and make it easier for people to share their data to make a difference.
Building on this principle, Data for Good, a UK-based not-for-profit service, is attempting to put this concept into practice. They aim to reshape how data is shared, through a consent-first, human-centric framework. By partnering with academics and research institutions, they are providing a platform for people to securely donate their personal data – whether from their weekly shop or their wearable tech – to medical studies to identify opportunities for earlier diagnosis of diseases such as cancer. Another example is the UK’s Smart Data Donation Service (SDDS) which was developed by the University of York with support from UKRI’s Smart Data Research UK. The SDDS is providing a secure way for individuals to share their digital footprints with researchers. By donating data from sources such as social media or gaming, people can contribute to studies on mental health and digital wellbeing whilst controlling how their information is used.
These kinds of data donations to researchers are also being facilitated by commercial organizations, from global tech giants to data intermediaries. For instance, Google, one of DTI’s partners, is proactively engaging with the academic community to encourage and support the use of its new Data Portability API for health research. While this work is in its early stages, several existing cohort studies are already examining the potential to integrate with the API to allow participants to consent to sharing account data from services such as YouTube.
On a much smaller scale, another example is Databonds, a platform which allows users to give access to their shopping accounts or loyalty card data, turning their everyday purchase data into anonymized insights that can support research. The company aims to provide users with the chance to contribute their data directly to medical research into life-threatening diseases, while also being rewarded along the way in a premium bonds-style scheme. This creates a cycle where data shared directly benefits the participating individual and the wider society.
DTI is taking on direct projects in this area as well, working with social science researchers, and others using internet data, to add options for data gathering. Another summer intern at DTI this year, Computer Science PhD student Arthur Borem, is building a toolkit to facilitate organizations in accessing portability APIs and transfer tools.
Together, these examples show how voluntary data sharing can support research into faster disease diagnostics in order to improve medical outcomes, support healthier lifestyles, and address public health emergencies.
Beyond Research
Beyond research, user-led data transfers can support health outcomes in other ways. For example, there are services such as Sweatcoin, which encourages physical activity through personalized incentives; this is made possible by the ongoing sharing of physical activity data.
Data sharing also played a crucial role in the collective response to the Covid-19 pandemic, where the sharing of location data enabled voluntary contact tracing and alerting individuals when they had been close to someone with an active case. On a personal level, I was in Bahrain during peak Covid-19 active cases, and to combat the spread of this disease, Bahrain’s health authorities launched the ‘Be-Aware’ app. During the pandemic, when the recorded cases was at its peak, contact tracing was an internationally recommended method of safeguarding public health.
Data portability can also play a role in green consumerism by enabling consumers to make sustainable decisions using their own financial and consumption data. A paradigm shift to more informed purchase decisions will be needed if we are to reverse the harmful effects of increasing emissions of carbon in our atmosphere. Commons, a US climate fintech platform, connects to users’ bank accounts via Plaid to automatically calculate the carbon footprint of their spending. This app helps you track spending habits, set savings goals, and shop more consciously by showing sustainability ratings for brands and products. As well as empowering consumers with information and insights, the app also offers the opportunity to purchase carbon offsets. In future, these kinds of carbon footprint calculators coupled with offset platforms will become increasingly precise and effective as they receive feeds of data from a wider range of sources such as from e-receipts, digital wallets, and travel itineraries.
Finally, there are a number of emerging data platforms seeking to empower consumers to earn from their online digital footprints. In some cases, such as with data intermediary Gener8, these platforms offer the chance to donate some of this unlocked value to charity. After speaking to a representative of Gener8, I learnt how its users voluntarily allow the platform to collect their zero-party data directly from online services in exchange for rewards such as gift cards or free products. Users can also choose to contribute their earnings to good causes such as UNICEF, Centrepoint, and the British Heart Foundation.
Looking Ahead
As data portability initiatives and laws develop worldwide – with continued support from the team at DTI – it is vital that governments design these frameworks thoughtfully with wider and sometimes non-commercial use cases in mind. Lawmakers and regulators must not think too narrowly about promoting competition or improving consumer choice. DTI’s latest regulatory roundup highlights how policymakers across many jurisdictions around the world are starting to recognize data portability’s potential to drive public-interest outcomes. I am also aware that similar efforts are emerging closer to my home in the Middle East, where entities such as the UAE’s Federal PDPL and the data privacy frameworks in Abu Dhabi’s ADGM and Dubai’s DIFC are embedding structured, machine-readable data access and transfer rights.
As I enter my third year of law school, I will be closely watching how these developments unfold. This internship at DTI has shown me how law and technology intersect, and I hope to build on that insight as I aim to qualify as a solicitor through the SQE. In the future, I want to explore different areas of legal practice, while continuing to follow how global regulatory frameworks evolve to support both commercial and non-commercial uses of data portability. After this summer, I’ll never look at my grocery receipt or my daily step count quite the same again.