From good to great: what patients can do for your medical research

Melanoma Patient Network Europe has a lot of experience in connecting researchers with patients, including organizing patient-led conferences. The group’s founder explains how productive interaction can be transformative to research.

What makes great research great?’ is a question I have been pondering for many years, reading scientific publications as a medical student, designing experiments during my PhD in biomedical sciences and writing grants as a researcher in Evolutionary Biology. The question became extremely personal when my husband’s melanoma no longer responded to the experimental treatment he was receiving in a clinical trial and there was nowhere but research to turn to. It has remained so ever since, and Melanoma Patient Network Europe, the network for patients with melanoma that I founded after his death, is a constant reminder that greatness in medical research is measured in lives well lived, not in articles published or honors received.

Losing loved ones provides sudden acuity on many aspects of life, and it has definitely sharpened my view on medical research, most recently on the Horizon Europe Cancer Mission Board. For me, greatness in medical research means a succinct conclusion to a relevant finding that addresses an important question — a step closer to a life saved or at least improved. It requires a deep, close to visceral understanding of the problem, a certain irreverence toward the approach — the most suitable, not necessarily the most convenient — and lucid analysis and communication.

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