The Patient Advisory Board (PAB) is comprised of ten members, including patient representatives, patient engagement experts, and ethicists. The PAB is commited to deliver a patient-centric approach ensuring that patients are represented from the beginning of the therapy development. The patients are actively involved in discussions throughout the project and assist in shaping iPSpine programs, services and initiatives designed to improve research (dissemination) within and outwith of the iPSpine project. This includes help defining patient needs, communicating about the iPSpine project to patient communities, and translating scientific findings to the public.
Mariska Straube is a patient engagement specialist at the Dutch Arthritis Society (DAS). She has a patient-facing role focused to increase patients’ active interest and involvement in research and policy activities of the DAS. She has particular experience with embedding patient involvement with rheumatic diseases research and in the process of research proposals appraisal. Within the iPSpine Patient Advisory Board she is involved as a patient involvement expert.
Why Mariska joint iPSpine:
I like to share my experiences to strengthen the engagement of patients.
Koert Hommel has a background in travel industry and international cooperation. He worked at JoHo’s marketing department and coordinated several youth talent development programs, together with the Dutch Ministry of Foreign Affairs. Currently Koert is unemployed due to chronic lower back issues. He has been experiencing lower back pain since he was a student at BUAS University, back in 1995. Between 2012 and 2018 he had several hernia and spinal fusion surgeries (L4/L5 and L5/S1). Koert is a huge fan of Bruce Springsteen and he likes to make music himself with his two bands. Besides that, he shares chronic pain stories on his own blogsite Erzitmuziekinmijnleven.org.
Why Koert joined iPSpine:
“Dealing with chronic pain is a lot about reinventing yourself. Breaking old habits and finding new meaning in life. As a world citizen I am always interested in international projects. Within the iPSpine project my back pain issues and international perspective come together. I will do my utmost to share my patient views with iPSpine research staff and project members”.
Over the last five years, Nikola Skoro has been developing pharma projects in the human and veterinary branches. Nikola joined iPSpine to assist facilitation and building up of the iPSpine veterinary network.
Nikola also suffers from chronic lower back pain and would like to help make a difference for patients.
Liisa Jutila has worked at the field of logistics from truck driver to transport manager and a teacher. She got slipped sick -98, same year as graduated from Plymouth University as a MSc in international logistic. Her plan was continue studies, but leg neuropathic pain and low back pain changed plan and 2005, instead having PhD she had to retire.
After some years of pain she find Finnish pain association (Suomen Kipu ry) and 2005 she became a president of the Finnish pain association. With her own experience she knew how important awareness and information is not just for the patient but also to their family and friends. She was one of the founders of Pain Alliance Europe, starting as a board member and later becoming vice president.
Within the iPSpine Patient Advisory Board Liisa is involved as a Patient Representative.
Why Liisa joined iPSpine:
“To be part of interesting project and giving patient perspective from national and European level.”
Pascale Berthet-Ottolini is a highly experience business development executive whose philosophy is to participate in the sucess of a therapeutic product that will change the lives of patients. She has more than 20 years experience within the private biotechnology sector and worked for several pioneers in the Vaccines and the Regenerative Medicine industry.
Why Pascale joined iPSpine:
“I have suffered from back pain and sciatica for over 30 years following infantile scoliosis which caused an inoperable herniated disc. Since conventional treatments have not solved my health problem, I am interested in innovative therapies that could eventually allow patients to find a therapeutic solution.”
Lars Assen is a PhD Candidate in the field of Bio-ethics on the topic of Responsibilization of Stem Cell Researchers. He has a background in Technical Medicine, Philosophy of technology and Ethics. He has two year of experience as lecturer at a University of Applied Sciences. Within the iPSpine Patient Advisory Board Lars is involved as an Ethics expert.
Why Lars joined iPSpine:
“To help stem cell researchers in conducting more ethical research by including and combining the perspectives of researchers, regulators and patients on stem cell research.”
Carina Pittens, Athena Institute is an Assistant Professor Patient Involvement at the VU University. She has a background in biomedical sciences, and science and health communication. She has particular expertise in the methodology to involve patients meaningful in health research, policy and care practice. Within the iPSpine Patient Advisory Board she is involved as a patient involvement expert.
Why Carina joined iPSpine:
“To contribute to more meaningful patient involvement in (fundamental) research.”
Leonie Chaudron works in the IT industry as a Product Lead with a focus on data and digitization. During her time in University she was diagnosed with Ankylosing spondylitis. For the past 4 years she has also been a member of the Patient Advisory Board of ReumaNederland.
Why Leonie joined iPSpine:
“This project could potentially have a big impact on people with lower back pains and I want to help make the project and its results easily accessible and understandable for the people who could benefit from it.”
Sjoerd van Raak has a background in human movement sciences and medicine. He has 15 years of experience working in top clinical hospitals as a Musculoskeletal and Neuroradiologist.
Why Sjoerd joined iPSpine:
“I have suffered from chronic back pain and sciatica for many years. Hopefully, from my experience as a medical doctor and chronic back pain patient, I can contribute to this project.”
Christopher Kruger (he/him), Science Communication Advisor at Catalyze
Christopher Kruger graduated with an Msc in Human Movement Sciences in 2021. His background encompasses various dissemination activities ranging from social media planning, grant proposals, and systematic reviews to presentations.
Within the iPSpine project, he is responsible for planning and undertaking dissemination and communication activities.