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)
