IJPDS International Journal of Population Data Science

Reproductive health affects nearly everyone at some point in life – whether through periods, infertility, contraception, vasectomy, reproductive cancer, or menopause. But information about people’s reproductive health is scattered across many different places: GP surgeries, hospitals, sexual health clinics, pharmacies, and more. This makes it difficult to understand how people move through the healthcare system – and where gaps or inequalities might arise.

To help fix this, researchers are increasingly linking together data from different sources. This technique, known as data linkage, can paint a fuller picture of reproductive health across someone’s life.

Until now, no one had looked at data linkage for reproductive health in the UK – or what topics or groups are being left out.  Our team looked at every UK study since 2000 that used linked data to answer questions about reproductive health. We found 272 in total. Many combined hospital and GP data, while others also brought in records from birth registries, schools, or even environmental data like the weather!

What we found shows promise – but also big gaps.

Most studies focused on reproductive cancers or maternal and child health. In contrast, very few explored contraception, menopause, gender-based violence, or health before pregnancy – all critical areas of reproductive wellbeing. Post-menopausal women, those with common reproductive conditions like endometriosis or PCOS, and men were rarely the focus.

A major issue was the lack of detail about who was included. Most studies did not report on people’s ethnicity, socioeconomic background, or immigration status – all of which can affect access to care and outcomes. Without this information, it’s hard to know whether current services are meeting the needs of everyone equally.

We also found that many studies didn’t explain how they linked the data, or discuss the quality of the data or completeness of linkage. This means we don’t know how well the data represent the general population. Only a handful involved members of the public in shaping what questions were asked. As public concern over how data is used grows, building trust and transparency is more important than ever.

Our findings show that reproductive health data linkage in the UK is possible, but is ad hoc and far from complete. Some groups and topics are being left behind. If we want services to work for everyone, we need to better understand the full range of people’s experiences – not just those who are already most visible in the data. This requires routinely linking previously unlinked data to answer currently unanswerable questions across the reproductive health lifecourse.

“Data linkage can be a powerful tool for improving reproductive health and services – but only if it includes everyone,” said Professor Jennifer Hall, lead author of the study. “We need to fill in the gaps and make sure the public is part of the conversation about how their data is used.”

 

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Professor Jennifer Hall, Professor of Reproductive Health at UCL Institute for Women’s Health, and Co-Director of the NIHR Policy Research Unit in Reproductive Health

This research project is funded through the NIHR Policy Research Unit in Reproductive Health, reference NIHR206129. The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.​

Hall, J., Harvey-Pescott, L., Ko, S. Y. (Jessica), Stevens, R., Pathak, N., Ali, I., Barrett, G., Shand, J. and Dickson, K. (2025) “The nature and extent of the literature on linked reproductive health datasets in the UK: a scoping review”, International Journal of Population Data Science, 10(1). doi: 10.23889/ijpds.v10i1.2989.