Our patient research partners
Patient involvement strategy in SQUEEZE
Patient involvement is at the heart of SQUEEZE’s success, being crucial for integrating the patient perspective into research and achieving long-term benefits through shared decision-making. To achieve this, the Patient Advisory Panel (PAP) contributing to the project is composed of seven Patient Research Partners (PRPs) from the EULAR PARE network and others recruited through EULAR’s liaisons. These PRPs, individuals living with RMD conditions, bring invaluable insights to the research from their lived experiences. They are recognized experts, having completed rigorous EULAR training covering diverse topics such as epidemiology, health economics, and effective communication with researchers. Additionally, the SQUEEZE PRPs are skilled patient partners, each bringing a wealth of experience from their extensive work on both national and international research projects.
EULAR plays a pivotal role in facilitating the PAP’s engagement. By strategically matching PRPs to relevant Work Packages (WPs) based on their interests and expertise, EULAR ensures that every WP benefits from tailored patient input. PRPs provide crucial feedback on various scientific aspects, including clinical study designs, trial protocols, informed consent forms, and patient participation logistics. They contribute to research design, define data collection variables, and analyze results. Additionally, PRPs are integral to communication and dissemination efforts, evaluating lay summaries, translations, and developing materials aimed at patients and the public. Furthermore, their involvement is key to co-developing the SQUEEZE Care model.
Throughout the project’s lifecycle, SQUEEZE consortium members work closely with EULAR to incorporate patient perspectives across all aspects of the project. EULAR conducts annual evaluations using the Patient and Research Engagement Evaluation Questionnaires, gathering anonymous feedback to continuously refine the patient involvement strategy.
During the initial phases of the project, the PAP meets monthly to discuss updates and challenges, ongoing activities, and gather collective input. These meetings are essential for leveraging the diverse viewpoints of the PAP. Additionally, EULAR organizes annual in-person meetings to enhance PAP interactions, encourage shared learning, and maximize PRPs’ contributions. These gatherings provide a platform to discuss strategies for deeper patient engagement and gather actionable insights, ensuring that research activities align with patient needs and effectively translate results into clinical practice.
Finally, the SQUEEZE consortium will follow the EULAR recommendations for collaborative research. This patient involvement strategy will be regularly evaluated and adapted as needed.
Souzi Makri
Souzi Holds a BA degree in Economics and has completed a course at the Open University UK, in the field of Psychology. She has been working as volunteer with the Cyprus League against Rheumatism (CYPLAR) since 2008 and currently holds the position of the Vice- President.
She was diagnosed with a rheumatic disease in 2008. Souzi has been trained as a Patient Research Partner by EULAR and she has become a EUPATI Fellow, after completing a 14-month course in the research and Development of Medicines. Souzi Makri has been the Chair of AGORA from September 2011 to September 2017, the year she was appointed as Honorary Chair.
From 2015- 2019 she has been the President of ENFA (European Network of Fibromyalgia Associations). She is currently the Chair elect for EULAR PARE. In the HIPPOCRATES project, Souzi is a member of the Patient Advisory Council and contributes as a PRP to WP1.
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Bertha Maat
Bertha Maat, a resident of The Netherlands and a member of the National Association ReumaZorg Nederland, is a Rheumatoid Arthritis Patient Expert. Her extensive experience as a Patient Research Partner (PRP) dates back to 2007, where she has contributed to various research projects.
Notably, she has collaborated closely with Prof. Dirkjan van Schaardenburg at Amsterdam University Medical Centers (UMC) on studies concerning the early diagnosis of RA and pre-RA. Additionally, Bertha has worked on research conducted by Prof. Conny van der Laken, also from Amsterdam UMC, focusing on the utilization of MRI and CT-scan in RA diagnosis.
Since 2019, Bertha has been actively engaged in the EULAR-PARE network, participating in research consortia and various EULAR-led projects. Despite her commitments to medical research, Bertha finds enjoyment and fulfilment in her role as a PRP.
Outside of her involvement in the medical research field, Bertha’s favorite pastime is tending to her garden.
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Ria Brokken
Ria Brokken, based in Zutphen, the Netherlands, has been an active patient advocate since her RA diagnosis in 2014. After retiring from her nursing career in 2017, Ria focused on projects that highlight the patient perspective in healthcare.
Since 2017, Ria has been involved with STAP (Key to Active Patient Participation), a collaboration between St. Maartenskliniek and RadboudUMC Nijmegen. This initiative integrates patient feedback into scientific research. Ria worked for 5 years on the “Biomarkers for Joint Homeostasis” project, together with a PhD candidate, for whom it was the graduation study. This project was noted for its clear and accessible presentation in the layman´s part. She also serves as a PRP (Patient Research Partner) trainer with STAP, supporting patient involvement in research.
From 2018 to 2022, Ria was a member of the Patient Advisory Council (PAR) at RadboudUMC Nijmegen’s Rheumatology Department. In this role, she contributed to advocating for patient needs and improving care quality.
Ria was constantly engaged in several projects, including a study on the non-medical switching from tocilizumab to sarilumab in RA patients. She worked in a DEMO-RA study, which focuses on using digital tools to empower RA patients through self-monitoring. In this study, Ria was co-author with a team, which created two abstracts and an article.
Every other year, Ria mentors doctors in training at Radboud Health University, focusing on healthcare innovations. She is also joining the Patient Advisory Council for Pharmacy at RadboudUMC. Additionally, she is currently a PRP in the SPADE project, which explores rheumatism in people with psoriasis.
Ria continues to contribute to patient advocacy and research, ensuring patient perspectives are considered in healthcare advancements.
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Alison Kent
Alison Kent (RGN) is a Rheumatology Nurse Manager at Salisbury Foundation Trust Hospital. She has been working in Rheumatology for the past 24 years and has been living with RA herself for 30 years. With both a personal and professional interest she feels motivated to educate and raise awareness of Rheumatological conditions and the impact of living with a long-term disease. Alison has been involved with several task forces in EULAR including those focused on the monitoring of co-morbidities, information dissemination, the safe use of gluco-steroids, difficult to treat RA and patients as research partners. Alison is a current member of the RCN Rheumatology Forum Committee. Alison holds an EMCC accredited certificate in coaching and is passionate about using coaching skills in a healthcare setting to improve patient focused goal setting and supporting patient empowerment.
Alison has participated in government lobbying and the setting of European standards for people with musculoskeletal diseases. She is also a volunteer for NRAS and an MSK Champion for Versus Arthritis. Alison is currently undertaking the Versus Arthritis Leadership Course which is aimed at current and future leaders in MSK
Alison has a real interest in supporting the learning needs of other Rheumatology Healthcare Professionals and has experience of facilitating workshops on topics such as coaching in healthcare, shared decision making, motivational interviewing, consultation and communication skills and the use of PROM’s and PREM’s. She has also lectured on the EULAR HCA postgraduate course.
Alison feels it has been extremely exciting and a privilege to have been working in an area of medicine that has, and is, developing so quickly thanks to new therapies and treatment approaches whilst maintaining a patient centred approach to care.
Camilla Stabell
Camilla Stabell holds a MSc in Development Studies from the School of Oriental and African Studies, University of London, and a BA in Communication from Goldsmith’s College, University of London, boasts over two decades of experience in communication within Norway’s voluntary and governmental sectors.
Currently, serving as the head of communication at the Norwegian patient organization for rheumatism, Norsk Revmatikerforbund, Camilla’s career path took an unexpected turn upon her diagnosis with Rheumatoid Arthritis in 2016. Despite her recent entry into the role of Patient Research Partner and the absence of formal training, Camilla has already taken on significant responsibilities.
Alongside her involvement in SQUEEZE, she has contributed as a Patient Partner in the panel for BMJ Rapid Recommendation on Therapeutic Drug Monitoring of TNFi in immune-mediated inflammatory diseases (IMIDs).
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Margot Bakkers
Margôt Bakkers, coming from the Netherlands, holds a Bachelor of Arts degree in (English) Education (B.A.E) and leads a vibrant social life surrounded by friends.
Engaging in her role as a Patient Research Partner (PRP), Margôt also serves as the chairman of the client council at her care home. Margôt’s journey with Rheumatoid Arthritis (RA) began in 1990 when she was 28 years old. Since joining EULAR and the EULAR-PARE network in 2010, she has been actively involved in approximately 10 task forces. Beyond her contributions to EULAR, Margôt has collaborated on projects with entities such as EMA, EUPATI, RT-Cure, and various university hospitals in the Netherlands.
Margôt takes pride in her role as a co-author, having contributed to six publications on PubMed. These publications encompass a range of topics, including recommendations, systematic literature reviews, points to consider, and defining difficult-to-treat Rheumatoid Arthritis. Her dedication to research and advocacy underscores her commitment to improving the lives of those affected by RA.
Jef van Rompay
Jef Van Rompay is from Belgium and has been battling Rheumatoid Arthritis since 2021.
With a career spanning back to 1982, Jef has worked diligently as a conventional physiotherapist. However, his journey took a significant turn in 2005 when he became a member of the patient partner program.
Jef’s involvement in patient research is extensive, encompassing both international (EULAR) and national Belgian scientific projects. Notably, he has contributed to EULAR projects such as the recommendations for cardiovascular disease risk management in patients with rheumatoid arthritis and other forms of inflammatory joint disorders in 2015/2016, as well as the update on EULAR points to consider for the use of imaging to guide interventional procedures in patients with rheumatic and musculoskeletal diseases (RMDs).
Furthermore, Jef played a pivotal role as a leading patient partner in updating the Patient Partners Educational Program for Rheumatoid Arthritis in Belgium. This project involved a systematic, scientific-based approach led by patient experts, showcasing Jef’s commitment to advancing patient education and empowerment in the field of rheumatology.
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Katy Antonopoulou
Katy Antonopoulou, a graduate of Panteion University of Athens in Public Relations, boasts a wealth of experience spanning over three decades. Specializing in Health Communications, Medical Marketing, patient relations, Advocating, Press Relations, crisis management, and event management since 1987, she has emerged as a prominent figure in the field.
Currently, Katy holds several prestigious positions, including President of SJÖGREN EUROPE, Member of the EULAR PARE Committee, Leader of the EULAR CEO WG, General Secretary, and External Communications Director of the Hellenic League Against Rheumatism.
Additionally, she serves as General Secretary of the Psoriatic Association KALYPSO, General Secretary of the Federation of Rare Diseases “EOS-SPANOPA,” and Communications Head of AGORA Federation for Associations of Patients with RMDs of Southern Europe.
Her professional affiliations extend beyond her organizational roles. Katy is an active member of the Greek Society of Public Relations, the International Association of Public Relations (IPRA), and the European Society of Public Relations (CEPR).
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