Lung Cancer Europe shared a post on LinkedIn:
“Last week the European Medicines Agency (EMA) released a draft paper recognising the use of Patient Experience Data in regulatory decision-making.
For lung cancer, this is important, as those with this disease have often been left out of how new medicines are developed, approved and made available. This paper is a step towards making sure symptoms, side effects and personal priorities count as evidence, not just the clinical data.
Patient Experience Data means information collected directly from people or their carers – how they feel and what matters most to them – without being filtered by others. EMA is encouraging developers to include this early in medicine development and keep going after approval.
EMA also notes that clearer methods and early discussion with patients, developers and regulators will be needed to make this work in practice.
The draft is open for consultation until January 2026.
At Lung Cancer Europe, we believe new treatments only make a difference if they reflect what people really need. We will review the paper and share feedback, and we invite others in the lung cancer community to join us.”
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