For years, we have viewed recruitment in clinical trials as a matter of numbers. How many patients? How many sites? How many days to reach the target?
But the real question, the one that now challenges ethics, science and society, is another: Which patients?
The population involved in clinical research often falls far short of reflecting the complexity of the real world.Women, people with migrant backgrounds, patients from low socio-economic backgrounds, the elderly, individuals with comorbidities or disabilities: all groups systematically underrepresented, if not entirely excluded.
The consequences are not just theoretical. A therapy validated on a homogeneous sample may be less effective or less safe, for those who do not match the “typical patient” profile. And so, what should be personalized medicine risks becoming standardized medicine, but not equitable medicine.
Rethinking clinical research means moving away from a logic of efficiency to embrace a logic of relevance.
It means designing accessible studies, communicating in understandable language, building trust with communities that have too often experienced research as something distant, if not outright hostile.
► Sometimes, listening to a single story is enough to understand how real the barriers are and how urgent the need for change is.
And above all, it means including the patient perspective from the very beginning, not only as recipients, but as co-creators.
Because those living with illness possess concrete knowledge that can enrich a study’s design far more than any demographic table ever could.
Diversity in trials is not a target to hit to comply with a guideline.
It is a principle of justice, of scientific quality, of respect.
It’s time we ask ourselves, every time we start a new study, a new investigation:
Who are we really including, and who are we leaving out?
Let Patient Affairs be. In fact, it already is.