Patients on patient forums share all sorts of things about their illness: from side effects and advice to messages of support. PhD candidate Anne Dirkson uses artificial intelligence (AI) to retrieve this information. ‘Ninety per cent of the side effects weren’t officially registered.’

‘Patient forums are really just like social media: all sorts of things are shared,’ Dirkson explains. ‘With a rare disease there is little chance you’ll be able to discuss it with your neighbour. And these patients often don’t know any fellow patients through others either. So a forum is useful for them.’

On the one hand, these patients share very factual information, for example how often they go for check-ups or what medication they take, and on the other, they discuss the emotional side of the disease. How do they deal with the obstacles they face in daily life, for instance in their family? Dirkson mainly focuses on the side effects mentioned by patients.  

These side effects are interesting because 90 per cent of them are not reported. Dirkson researched the value of these side effects being shared. ‘Patients may share side effects that were not yet known. For them it is good that these side effects are recognised. It can also be that a certain side effect that was already known is mentioned way more often than expected. This could mean it has a big impact.’