Data portability and researcher access
Last week, I helped organize a full-day workshop dedicated to researcher access to data. While it hasn’t seen a lot of daylight in our newsletters and blogs, this is a topic DTI has been working on for years. We talk a lot about the privacy and competition contexts for data portability, how important it is for people to be able to move their personal data where they want and to allow data to empower their choices rather than restrict them. But some of that data, including anodyne-seeming individual experiences like our searching and browsing activity and the things we see on social media, can in other contexts help us understand the impacts of technology on our society, or provide insights into us, individually and collectively, that can lead to real benefit.
DTI’s 2023 Annual Report mentioned an early example of our work on researcher access: my service on the steering committee of a project run by AcademyHealth. The effort supported medical researchers using Internet activity data, received through data portability, to look for evidence that might facilitate early diagnosis. Data tells many stories, in different contexts and to different audiences.
We continued this work through conversations and collaborations over the subsequent months and years. And our 2025 Annual Report provided a brief window to this in a bullet point: “Building on extensive collaborations with medical and sociotechnical researchers in the US, UK, and Europe, we developed and shared a prototype toolkit to facilitate user data donations.” That toolkit lives now as an open-source repository, Pardner.
The landscape for data access for researchers is incredibly rich. Substantial work on tools and frameworks for the whole pipeline, from user participation and education to data collection and secure analysis setups, is happening in the United States and in Europe, across university research environments and nonprofit organizations. Focusing specifically on the data transfer piece, our wheelhouse at DTI, methodologies range from user download and upload pathways – guided by researcher platforms – to specific-purpose applications and browser extensions. Regulation is adding to this conversation as well, particularly in Europe, where Article 40 of the Digital Services Act requires the creation of researcher-specific data access tools, under certain circumstances.
Technology and infrastructure development isn’t useful without effective deployment. So as we were building the Pardner toolkit, I found myself in conversations with a few key organizations in this space, and together we set out to host two workshops focused on researcher data access technologies: one in London in March, with the Open Data Institute, and last week’s in Princeton, with the Accelerator.
To these conversations, DTI brought two things: first, our Pardner toolkit and other DTI infrastructure including the Data Trust Registry; and second, humility and an open mind, recognizing that we bring a specific perspective to these issues, and we do not want to determine that everything we see is a nail just because we hold in our hands a hammer.
The context for data portability and researcher access is changing, as well, for the same reason as so many other technology changes right now: artificial intelligence is uprooting assumptions, overcoming prior limitations, and introducing new areas of concern and question. Here, AI provides new opportunities to build easier access, transfer, and translation tools – and new ways to understand data and learn more from it, including for research purposes. AI also represents a shift in the way people use technology, and the way technology impacts society, both significant questions for social and political scientists. Even for medical contexts, many people who once asked a search engine first about their symptoms will now instead check with their AI chatbot of choice.
The need for data portability – including tools, trust, and infrastructure – is much richer today than is widely known. Its original use cases are still fully present and critical: helping people have a copy of their data, and helping them use their data in different services, whether for switching or multihoming. As new needs for data transfers arise, we at DTI are always thinking about how to fulfill our mission in the expanding horizon. Expect more on the researcher access side after we and our collaborators fully digest and report out on the workshops.