Patient Advisory Board (PAB)

The Patient Advisory Board (PAB) is comprised of eleven 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.
Chairs of Patient Advisory Board

Zoë Bacon is a Medical Engineering Student at Cardiff University. She is currently writing her dissertation on motion analysis of low back pain assessment. She is also a patient governor at Great Ormond Street Hospital. Within the iPSpine Patient advisory board she is involved as a Patient Representative.

Why Zoë joined iPSpine:
“To be a voice for young people who this project might affect.”

Read Zoë’s story here

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.”

 

Patient Advisory Board Members

Esther Metting studied psychology and epidemiology and is currently working at the University of Groningen. She did her PhD in the field of personalized primary care respiratory medicine. At the faculty of economics and business as assistant professor and at the medical faculty as postdoc researcher.  Field of expertise are eHealth implementation and primary care respiratory medicine. She is chair of the inhaler research workgroup (IRW). Moreover she is involved in several eHealth studies among which the EU-H2020 Connecare project.

Besides her daily work she is board member of the local rheumatology patient organization. Since 2002 Esther had substantial physical problems due to ankylosing spondylitis, enthesitis and degenerative vertebra.

Karin Jongsma is an Assistant Professor in Bioethics at Julius Center, UMC Utrecht. She has a background as bio-ethicist and is interested in patient involvement, decision-making and bio-politics of new technologies. She has an education in health sciences and research methods and PhD in bioethics. She is involved in the Patient Advisory Board as an ethics and patient involvement expert.

Why Karin Joined iPSpine:
“This project combines all my interests + I believe that good ethics research is done with “your feet in the clay” (Plus I am the daily supervisor of a PhD student named Lars Assen, also involved in the Patient Advisory Board).”

 

Rian de Brouwer is trained as a laboratory technician and worked at Organon Teknika/bioMérieux as laboratory technician, software tester and at global customer service in the medical devices field. Currently, Rian is unemployed due to her lower back pain problems and is in the rehabilitation phase after spinal fusion. She is experiencing lower back pain since she was 17 years old. The main issues are sitting and standing. She had 2 surgeries, one in 2007 for a herniated disc (L4/L5) and the other in 2019 for spinal fusion (L4/L5). Within the iPSpine Patient advisory board Rian is involved as a Patient Representative.

Why Rian joined iPSpine:
“I know what it’s like wanting to participate in life, but not being able to due to disability and pain. I’m very grateful for the iPSpine project goals. Let’s all help (lower) backpain patients to participate in life again. I hope to be a lower backpain patients advocate within the PAB.”

Read Rian’s story here

Anne Harrison is an Oral Health Advisor. Her hobbies are gardening, walking, horse riding and she generally loves animals and to be outdoors. She has experienced a long journey of therapies for her back pain, such as physio massage, facet joint injections, and spinal injections. Some of these therapies have helped her, but she decided to have three vertebrae fused and a bone graft in 2018, which has been successful. Within the iPSpine Patient advisory board Anne is involved as a Patient Representative.

Why Anne joined iPSpine:

“By joining iPSpine, I hopefully help the progression of this amazing product so others in the future have another alternative to the process I have endured.”

Read Anne’s story here

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”.

Read Koert’s story here

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.

Read Nikola’s story here

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.”

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.”

Kristine Stickney is a Senior Project Manager at Catalyze. She graduated with an MSc in Neurosciences from Vrije Universiteit, cum laude. Her background includes project coordination and management in life sciences research for both CROs and non-profit academic research organizations. In her previous role, she brought together patients, clinicians, policy-makers, insurers and other key opinion leaders to improve cancer care delivery in the United States. Her portfolio includes a diverse set of projects, from pre-clinical to clinical trials, and she has worked in a wide-variety of academic and industrial settings.

Why Kristine joined iPSpine: 
“To lead dissemination and communication efforts for this novel, cutting-edge project that has the potential to improve millions of lives.” 

Olav Veldhuizen is Project Manager at Catalyze. He holds an MA in Cultural Management from Northumbria University, UK. Mr Veldhuizen has more than 14 years’ experience in the management of large, international collaborative biomedical research projects, working closely with universities, large pharma and SMEs. He also has extensive experience in stakeholder engagement and dissemination activities, in particular working with patients and patient organisations as well as regulatory authorities such as the European Medicines Agency. In addition to Project Management he has had leading roles in dissemination work packages for several European projects. This has included initiating, organizing and running workshops to bring together stakeholders and multidisciplinary partners facilitating collaboration and dissemination.

Why Olav joined iPSpine:
“To support the dissemination and communication work package for this project.”