Call of Interest: Six week course for Tutors in Self Management in conjunction with Health Prevention and Disease Unit
Posts by Mary Vella
EUPATI Fundamentals Training partly sponsored by Malta Council for the Voluntary Sector (MCVS)
EUPATI Fundamentals Training partly sponsored by Malta Council for the Voluntary Sector (MCVS)
Sina Bugeja, Vice President of ARAM (Arthritis and Rheumatism Association Malta) has followed the EUPATI Fundamentals training that was held online over 2 full days due to Covid-19 restrictions. The training was organized by the European Patients’ Training Academy on Therapeutic Innovation which is based in Brussels, Belgium.
The course was a mix of practical and classroom learning guides aimed at professionals focusing on the processes of engaging patients throughout the stages of medicines development providing a strong foundation for successful partnership between the patients and patient organizations and the pharma industry itself. The focus of the course remained basic knowledge about patient involvement with an overall introduction to standards and best practices, and a library of practical exercises. The training also encouraged patients’ organisations representative to ensure that members who are also patients become involved in research, drug trials and lay literature writing. Furthermore, when exposed to such activities, patients will also be empowered to develop a stronger voice and represent themselves in more assertive ways especially with regards to patients’ rights.
The course was subdivided into a number of modules.
- Principles of patient engagement where the focus was the comprehension of the benefits all around for patient engagement in medicines in R&D. Within the western world, this is the only way forward where patients are involved at the various stages and give regular feedback to R&D and are considered as active, indispensable partners;
- Patient engagement roadmap where the requirements and precise time points at which patient engagement should occur was discussed in detail with a clear focus on the benefits elicited from this for both the patient community and the industry;
- Setting up a patient engagement activity where through a hands-on practical approach, an engagement exercise was carried out and was discussed and evaluated at the end of the day. The types of interactions and which patient profiles should be used at different stages of medicines R&D was addressed;
- Quality criteria in patient engagement: a very relevant module that helped participants to identify typical instruments used to identify relevant patients’ protocols for recruiting them;
- Moving from Theory to Practice based on practical Expected local reactions had to be indicated and these challenges addressed so as to minimize recruited losses when operationalizing patient engagement. The cultural differences in behaviour were discussed.
Further discussion focused on the pharma sponsorships which are, in actual fact indispensable but do not control in any way the input from patients nor the outcome conclusions. The ethical issue as to whether patients should be compensated for their expertise and time was highlighted and discussed and a clear agreement arrived at. Fair compensation for patients’ and patients’ advocates is imperative. The Quality of Life [QoL] endpoints were defined as the only acceptable terminations using both qualitative and quantitative methods in the research methodology. The training proved to be very interesting and beneficial and was partly sponsored by the Malta Council for Voluntary Organisations.
ARAM congratulates Mrs Sina Bugeja M.Sc.(Wales)
SIS PROJECT 2021
Thanks to the grant from The Small Initiative’s Scheme managed by The Malta Council for the Voluntary Sector (MCVS), our project Keeping Mobile and Pain Free During Covid-19, successfully came to an end. ARAM thanks all participants, service providers, and SIS Fund Managers at MCVS for their kind assistance.
6th Webinar/Video Tous Include
ARAM in collaboration with The Aristotle University of Thessaloniki, Greece, and associations from Greece, Cyrus, and Spain are taking part in a European research project on osteoarthritis pain. This project focuses mainly on patients’ perspectives and how pain is dealt with. We are happy to present a series of educational webinars, a series where expert discussions on different aspects of ‘Living with osteoarthritis’ are conducted. We encourage patients to watch the entire series of webinars to learn about the holistic approach to improving one’s health and pain management. The topics discussed in this sixth webinar discusses Innovative Technologies in tackling Chronic Pain
5th Webinar/Video Tous Include Project
ARAM in collaboration with The Aristotle University of Thessaloniki, Greece, and associations from Greece, Cyrus, and Spain are taking part in a European research project on osteoarthritis pain. This project focuses mainly on patients’ perspectives and how pain is dealt with. We are happy to present a series of educational webinars, a series where expert discussions on different aspects of ‘Living with osteoarthritis’ are conducted. We encourage patients to watch the entire series of webinars to learn about the holistic approach to improving one’s health and pain management.
The topics discussed in this fifth webinar include:
Mindfulness technique: a “good life” help to dare to be ourselves
Vasiliki Christodoulou, Lecturer in Psychology, UCLan University, Cyprus, Licensed Psychologist
The role of the Health Visitor in the prevention and management of Osteoarthritis pain through Mind f ullness
Sisi Klitsa, Health Visitor, MSc Clinical and Community Psychology, Trained in EISA Systemic Counseling, Mindfulness instructor
Osteoarthritis and Work
This is the fourth webinar in the series – ARAM in collaboration with The Aristotle University of Thessaloniki, Greece and Associations from Greece, Cyrus, and Spain are taking part in a European research project on osteoarthritis pain. This project focuses mainly on patients’ perspectives and how pain is dealt with.This fourth webinar features: Work and chronic rheumatic and musculoskeletal disorders-Giannis Konstantakopoulos, Dr. Mining Engineer-Metallurgical Engineer NTUA Head of the National Focal Point of the European Agency for Safety and Health at WorkVocational Rehabilitation Plans for People with Disabilities-Konstantinos Charalambous, Social Integration Officer, Department of Social Integration of People with Disabilities, Ministry of Labor, Welfare & Social Insurance
3rd Webinar/Video Tous Include Project
ARAM in collaboration with The Aristotle University of Thessaloniki, Greece, and associations from Greece, Cyrus, and Spain are taking part in a European research project on osteoarthritis pain. This project focuses mainly on patients’ perspectives and how pain is dealt with. We are happy to present a series of educational webinars, a series where expert discussions on different aspects of ‘Living with osteoarthritis’ are conducted. We encourage patients to watch the entire series of webinars to learn about the holistic approach to improving one’s health and pain management.
The topics discussed in this third webinar include:
The relationship between obesity & osteoarthritis and how I can lose weight – Maria Hatzipavlou, Clinical Dietitian, MSc
The Role of Exercise in Osteoarthritis – Maria Maridaki, Associate Professor of Occupational Physiology TEFAA, EKPA
2nd Webinar/Video Tous Include Project
ARAM in collaboration with The Aristotle University of Thessaloniki, Greece, and associations from Greece, Cyrus, and Spain are taking part in a European research project on osteoarthritis pain. This project focuses mainly on patients’ perspectives and how pain is dealt with. We are happy to present a series of educational webinars, a series where expert discussions on different aspects of ‘Living with osteoarthritis’ are conducted. We encourage patients to watch the entire series of webinars to learn about the holistic approach to improving one’s health and pain management.
The topics in this second webinar are as follows:
Therapeutic exercise programs in Osteoarthritis – Dimitris Vasmaris, Physiotherapist, Coordinator Geriatric Physiotherapy P.S.F.
Osteoarthritis & Everyday – George Soulis, General Practitioner / Geriatrician, Geriatric Evaluation Center Errikos Dunan, 2nd Vice President of the Hellenic Society for the Study and Research of Aging
Tous Include Project
ARAM in collaboration with The Aristotle University of Thessaloniki, Greece, and associations from Greece, Cyrus, and Spain are taking part in a European research project on osteoarthritis pain. This project focuses mainly on patients’ perspectives and how pain is dealt with. We are happy to present a series of educational webinars, a series where expert discussions on different aspects of ‘Living with osteoarthritis’ are conducted. We encourage patients to watch the entire series of webinars to learn about the holistic approach to improving one’s health and pain management.
This video is the 1st webinar in a series from the Tous Include Project, entitled: Osteoarthritis, what I need to know What causes it?
The topics presented are as follows:
Osteoarthritis. What causes it and what are the ways to prevent it – Athanasios Koutroubas, Rheumatologist
Osteoarthritis. Ways of dealing with it -Dimitrios Kasimos, Rheumatologist, Brigadier General, Director of the Military Health Committee of Athens
Apps can help treat chronic pain -Antonis Bilis, Postdoctoral Fellow, Dept. Medical AUTh
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This project has been funded with support from the VO Fund managed by the Malta Council for the Voluntary Sector (MCVS). This project/publication reflects the views only of the author, and the MCVS cannot be held responsible for the content or any use which may be made of the information contained therein.
