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| Lindsey To | Jonathan Hook | Rosendy Galabo |
Lindsey To, UX Designer and Research Associate with the Smart Data Donation Service at the University of York, leads research exploring how researchers discover, evaluate and use secondary data, with the aim of designing services that better support data-driven research.
When people hear about the Smart Data Donation Service (SDDS), they often immediately think of the data donors. This totally makes sense as an important part of the project is about enabling people to donate their digital data in ways that are safe, transparent and ethical, opening up new opportunities for research that can benefit society.
However, collecting donated data is only one half of the picture. For that data to create meaningful impact, researchers also need to be able to find it, understand it and feel confident using it.
As we began thinking about what the research experience of SDDS could look like, our co-design team kept coming back to a simple question: what do researchers actually need from a service like SDDS? And, just as importantly, what would help them feel confident enough to engage with us?
From assumptions to understanding
Initially, the answer seemed obvious. Researchers needed a clear way to request access to data, understand the processes and requirements involved and work with it within secure environments. These are essential parts of any trusted data service.
But the more we explored the question, the more we realised that we were relying on our own assumptions. We had focused solely on what a research service “should” provide, without truly grasping the actual journey researchers undertake when working with secondary data.
Therefore, the co-design team took a step back. Rather than starting with the service we wanted to build, we wanted to understand the complex and often less visible journey researchers already go through when working with secondary data. How do researchers find datasets in the first place? What helps them decide whether a dataset is worth pursuing? At what point do they decide that the time and effort required to gain access is or is not worth it? What challenges do they encounter as they work with secondary data? And what kind of support could genuinely make those decisions easier?
To explore these questions, I led a study on behalf of the co-design team, spoke with researchers from a range of disciplines and research contexts, including people with experience of administrative data, health records, longitudinal cohort studies and other forms of secondary data.
Instead of asking broad questions about data access, I invited each participant to tell me the story of a real research project, from the moment the idea first emerged through to sharing or publishing the findings. I was interested not only in what they did, but in how they made decisions along the way and the challenges they encountered throughout that journey.
When the picture began to become much clearer
Across the interviews, researchers described working with secondary data as a complex end-to-end process that goes far beyond simply “finding and downloading data”.
Their experiences suggested that SDDS should not only think about providing access to donated data, but also about how researchers can understand, evaluate, trust, request, use and interpret that data throughout the research journey.
One of the most prominent themes was that the quality of documentation determines the perceived suitability of the data. Before investing significant time, money and effort in gaining access, researchers need to know whether a dataset can answer their research question.
However, the challenge lies in the fact that much of the critical information only becomes apparent after access has already been granted. This means that clear and comprehensive documentation can make a significant difference. Across the interviews, the quality of documentation consistently shaped how quickly and confidently researchers could assess whether a dataset was right for them
This highlighted another important need: researchers need transparency about access timelines before they commit. Knowing roughly how long an access process might take, what approvals are required and what they need to prepare in advance can help researchers make realistic decisions much earlier in their project. Rather than discovering these constraints halfway through the process, they can decide from the outset whether a dataset is feasible for their research. This is one of the areas now informing our thinking about how future SDDS researcher services might work.
Continuing to listen to researchers
We began this work with a simple question: “What do researchers actually need when working with secondary data?”. And what we have heard so far suggests that gaining access is only one stage in a much longer journey. Researchers need to be able to find relevant data, work out whether it is suitable for their research question, understand what is required of them, and feel clear and confident about what happens next.
For SDDS, this matters because donated data can only create public benefit if the people who want to use it are able to navigate that journey successfully. Researcher access is only one part of the wider SDDS service, but listening to the research community gives us an opportunity to shape this part of the service around real experiences rather than assumptions.
The insights from this work are already informing how we think about the “For Researchers” section of our public-facing website and future platform for accessing donated data.
And this is not the end of the research. As SDDS continues to develop, we want researchers to remain part of that process. If you work with secondary data, or have tried to use it and encountered barriers along the way, we would love to hear about your experience. By sharing the parts of the research journey, you can help us design a service that works not only for the data it holds, but also for the researchers trying to turn that data into meaningful research.
You can find out more about how to get involved in this poster.
About the author
Lindsey To, Jonathan Hook and Rosendy Galabo are part of the SDDS Co-design team.
The SDDS Co-design Team works to ensure that the people who donate data, and the researchers who use it, are actively involved in shaping the service. The team’s work is grounded in the belief that people are experts in their own experiences and needs, and that involving them throughout the design process is essential to building a service that is trustworthy, useful and usable.
The team’s current researcher journey study, led by Lindsey To, explores how researchers discover, evaluate and work with secondary data to help inform services that better support data-driven research.
The Smart Data Donation Service is a UK-based research infrastructure project.
We help people to safely donate copies of their digital data, so it can be used in a way which serves the public good. We build tools and services that help people access and donate data from the digital platforms that they use in their everyday lives. We then store the data securely and make it possible for researchers to study it in safe, controlled ways. We’re using data to generate insights that inform positive changes in society, and we’re empowering individuals to engage with and take charge of their digital lives.
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