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3 articles
Rare disease registries are among the UK's most ambitious attempts to make small patient populations visible to clinicians and researchers. They also expose hard questions about consent, standardisation, linkage and statistical disclosure—questions that determine whether the data can be trusted and used well.
A routine GP consultation produces more than a narrative note. It generates structured codes, quality indicators and free text that can be extracted for research—if the data are good enough. This explainer traces how a ten-minute appointment becomes secondary-use health data, and where patients should look for the gaps.
Smartwatches now generate heart rhythms, oxygen levels, sleep scores and readiness indices by the hour. We separate the handful of measurements with genuine clinical traction from the ones that are, for now, consumer decoration — and explain how to raise a wearable finding without derailing a ten-minute appointment.