Validation project

Medical records from UK general practices have the potential to allow much-needed research to be conducted into uncommon diseases like bullous pemphigoid and pemphigus vulgaris. Access to the anonymised medical records for millions of people would allow us to conduct high-quality research into these diseases – but only if we could reliably identify people with bullous pemphigoid and pemphigus vulgaris from their GP records.This hasn’t been looked at before, so we sought to determine how reliable the recording of bullous pemphigoid and pemphigus vulgaris was in GP records. 

We compared the diagnosis recorded in GP records (bullous pemphigoid or pemphigus vulgaris) with the blistering skin disease diagnosis given to that person during any hospital admissions (regarded as the “correct” diagnosis).

We are able to reliably identify people with bullous pemphigoid from their GP records. For every 100 people with a diagnosis of bullous pemphigoid in their GP records, 93 of them actually had bullous pemphigoid.

We were not able to reliably identify people with pemphigus vulgaris from their GP records. For every 100 people with a diagnosis of pemphigus vulgaris in their GP records, about 40 actually had a different blistering skin disease (such as bullous pemphigoid).

We are able to use medical records from general practices to conduct research into bullous pemphigoid. However, until the recording of pemphigus vulgaris improves, we are not able to use these records to look at pemphigus vulgaris

NIHR Research for Patient Benefit