Clinical trials need patients from day one

“Patients and patient advocates [should] take part in all the steps of the research, and actually start with the research questions,” said Lise-lott, who is a patient advocate at Cancer Research KI (CRKI) and chair of Blodcancerforum, Sweden (the Swedish Blood Cancer Association).

“When the patients are involved from the beginning, it’s easier for them to get access to the treatment,” Lise-lott said in a video interview on the sidelines of the EUnetCCC educational seminar on molecular tumour boards, which took place in Barcelona on 1-2 December 2025.

By participating in clinical trials, cancer patients can gain earlier access to new and innovative medicines and therapies.

Access to innovative treatments earlier in the treatment pathway may also improve the opportunity for cancer patients to respond to and benefit from them, before the disease has progressed further and before their immune system has been affected by multiple previous lines of treatment.

“What we are always talking about is the challenge to get access to new, innovative treatments — often due to their high costs,” Lise-lott said.

However, as she is careful to point out, enrolment in a clinical trial does not guarantee that the patient will respond as hoped.

“Is this the right treatment for this patient, or not? We don’t have the answer yet, and there always has to be a first time,” she said.

That uncertainty, Lise-lott argued, is exactly why patients need to be part of the conversation from the outset.

“I think it’s very important to involve the patient, to discuss: this is the information we have, this is what we know. But we won’t know how this will actually have an impact on your disease — even though it might be the right pathway forward,” she said.

Ultimately, for Lise-lott, patient involvement and clinical research share the same goal.

“When we find these new, innovative medicines, [what matters is] that the right patients get the right treatment at the right time,” she said.