Talk:Clinical Practice Research Datalink

Data quality issues
This the same data source for the study lead by AB Bindman which found it to be unusable for international comparisons because of data quality issues. More than 30% of all encounter records had no indication/problem recorded. Problem may be in record somewhere but not linked to the encounter. The study was able to use a random sample of encounter data from USA, Australia and New Zealand data sources with proper linkage between encounters and the problems managed. Information from a conference presentation by Dr Helena Britt. tygrus (talk) 08:22, 1 December 2009 (UTC)).

Anonymised?
This article talks about the data being anonymised. However, it also talks about linking to external disease registries on an individual patient level. Those two things seem inconsistent, as I can't see how it would be possible to link to external disease registries if the data were truly anonymised. It seems more likely that the data are pseudonymised (ie the identity of the patient is not accessible to someone given the standard data elements, but that somewhere the link between the records in the database and an identifiable individual still exist, presumably under much tighter security than the rest of the database). If the data were anonymised, then it would be impossible to link the data records to an identifiable individual.

However, I don't know what actually happens here. Maybe someone with intimate knowledge of how the database works could clarify?

AdamJacobs (talk) 08:17, 5 May 2012 (UTC)

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