July 31st, 2024

The iPSpine Patient Advisory Board (PAB) was established to assist the consortium in aligning the project outcomes with patient needs. This meant helping the consortium define what these needs were, how to optimally address them, and inform patients on the project results. To that end, the PAB enabled the active interaction of patients with scientists, facilitating dialogue and engagement that was critical to understanding and learning from the patient perspective. The PAB was comprised of patient advocates, patient engagement experts, clinicians, ethicists, and other consortium body members when appropriate. The Dutch Arthritis Society (ReumaNederland) played a crucial role in the PAB’s development with their extensive patient network, as well as the board’s functioning with their expertise in patient engagement.

With the kick-off meeting held in October of 2019, the first iteration of the PAB came together, co-chaired by Dr. Karin Jongsma, an Associate Professor of Bioethics at the Julius Centre of the University Medical Centre Utrecht, and patient co-chair, Dr. Esther Metting, an Assistant Professor of Psychology and Epidemiology at the University of Groningen. The rolling nature of the PAB dictated that members would leave and join throughout the lifetime of the project. With the final iteration of the PAB, Dr. Carina Pittens, an Assistant Professor of Patient Involvement at the Athena Institute took on a more advanced role, moving from a patient engagement expert to PAB chair.

A PAB activities timeline was developed, defining when and how often the PAB were to meet, and where they could provide their input and feedback to the project. Activities ranging from telling their own patient story, providing feedback on project content, learning about project progress in iPSpine science cafés, and in-person meetings were determined.

The PAB achieved a great deal in holding an end of project patient symposium, an event which brought patient advocates, other lower back pain sufferers, researchers, and medical professionals together to discuss current treatments for lower back pain and iPSpine’s results.