Patient Advisory Board promotes co-determination in research
The diagnosis of cancer changes the life of a child and their family abruptly. In addition to medical challenges, many questions, worries and uncertainties arise. But who better to judge what those affected really need than people who are “in the know”?
This is precisely where the new SPOG Patient Advisory Board (SPAB) comes in. It brings the voices of patients and their families directly into clinical research. The aim is to make studies even more relevant to everyday life and their results easier for laypeople to understand.
Why is a Patient Advisory Board so important?
SPAB members know what they are talking about: either they themselves or a relative had cancer at a young age. As experts, they support our researchers, the staff of the SPOG Coordination Centre and the Protocol Working Group by:
- sharing their personal experience to organise studies with a practical orientation,
- contributing to the development of new research projects,
- evaluating study proposals from the patient’s perspective,
- helping to design comprehensible information material,
- publicising the importance of research and
- bringing the perspective of those affected into decision-making processes.
SPOG was looking for committed members at the end of 2024 – and are now pleased to announce the first five: Paul Castle, Claudio Nicita, Nicole Scobie, Nicole Seiler and Gaëlle Solioz. “The five founding members bring a wide range of experience, perspectives and backgrounds to their new tasks. We are extremely pleased that they are involved in the SPAB,” says Raffaele Renella, MD PhD PD, who set up the SPAB on behalf of the SPOG Board and will head it up together with one of the five members.
The constitutive meeting took place on 7 March 2025 in Bern. The SPAB can accept up to seven members. Anyone interested should get in touch with Dustin Singer at the SPOG Coordination Centre.