The Malta Independent 22 February 2018, Thursday

Explaining the enigma in Medicines Research & Development

Rob Camp and Gertrude Buttigieg Sunday, 14 February 2016, 21:31 Last update: about 3 years ago

How can patients have more meaningful involvement in the research and development of medicines? How can we equip patient advocates with the information and knowledge they need to do their work? How to understand the language and terms used by medici

If these are some of your questions, or questions asked by your service users, we are happy to provide you with answers in the EUPATI Toolbox on Medicines Research & Development. The European Patients' Academy (EUPATI) has launched an online Toolbox for patient groups, patient advocates and anyone who is interested in learning more about the medicines research and development (R&D) process. Users can acquire the knowledge to make a meaningful contribution to medicines development and to the broader dialogue around patient empowerment. This online educational resource allows users to freely discover, adapt and share materials.

"The toolbox is a comprehensive, self-explanatory, educational resource that has been built so that learnings on medicines R&D can be developed and shared by patient advocates. It is the result of a long-term, concerted effort by expert stakeholders including patients, researchers and academics. Our vision is that thousands of patient advocates in Europe will leverage the toolbox to enable more meaningful patient involvement and partnership in medicines R&D. The toolbox is EUPATI's second core product, after the Patient Expert Training Course, designed to support patients with information and knowledge,'' says Jan Geissler, Director, European Patients' Academy.

"As the Maltese Patient representative, at the initial stages of the project I always thought that this would be of little value for Malta, as three years ago I was not aware of the amount of research which goes on in Malta. Today, after all the involvement and all that I have learnt through EUPATI, I am so happy and proud to see that the EUPATI toolbox is accessible to the public. I trust this will be a valuable tool for patients, patient advocates and also for professionals and researchers to give more opportunities and better value to the contribution of patients to and in their work," Gertrude Buttigieg, Patient Representative for Maltese NLT & Secretary Malta Health Network.

The online toolbox is available in seven languages (English, French, German, Spanish, Italian, Polish and Russian) and contains over 3000 expert materials on the 'A-Z' of medicines R&D. For example, content includes information-rich modules and best-in-class educational materials on discovery research, clinical development, regulatory affairs, medicinal safety, pharmacovigilance and the principles of health technology assessment. Users can access a wealth of fact sheets, graphics, slideshows, videos, recorded webinars, print-ready materials as well as a full glossary. European patient groups and patient advocates are invited to use the toolbox to discover the latest educational resources, to educate and train patient communities, and to identify opportunities on how to get involved in medicines R&D.

"Patients no longer view themselves as 'recipients' of healthcare innovation. They are embracing their new power to shape the medical advances that are shaping their lives. We hope this toolbox will be a helpful resource to empower patients with more knowledge about how biomedical R&D works," according to Roslyn F. Schneider MD, MSc, Global Patient Affairs Lead, Pfizer.

You can access the ' EUPATI Toolbox on Medicines R&D' at www.eupati.eu.

Discover more about the 'EUPATI Toolbox on Medicines R&D' by going to https://vimeo.com/152251690.

EUPATI is represented in Malta by the Malta Health Network and over the coming weeks representatives from the Maltese National Leaders team, including Ms Gertrude Buttigieg (Patient Leaders) and Ms Anne Micallef (Europa Donna Malta (Breast Care Support Group), the first Maltese EUPATI Patient Expert Training Course Fellow) will be carrying out information sessions on EUPATI and the benefits of accessing the EUPATI toolbox. Other representatives are Ms Margot Pisani for PRIMA and Prof Pierre Mallia for the University of Malta. For further details one can email us on mt-nltteam@eupati.eu .

You can follow us on Facebook on www.facebook.com/MaltaHealthNetwork/ or www.facebook.com/eupati.eu/

The European Patients' Academy on Therapeutic Innovation provides scientifically reliable, objective, comprehensive information to patients and the general public on the research and development process of medicines. It will increase the capacity of patients and the lay public to be effective advocates and advisors, e.g., in clinical trials, with regulatory authorities and in ethics committees. EUPATI is a team of 33 organisations, led by the European Patients' Forum, made up of a unique combination of patient organisations, university and not-for-profit organisations expert in patient and public engagement, along with European pharmaceutical companies working in research. EUPATI wants to offer information and education that will help involve patients and patient advocates throughout the medicines research and development process.

EUPATI aims to make a visible difference to all stakeholders involved in medicines research and development, clarifying ways for a more meaningful involvement in areas like drug discovery, clinical trials planning and conduct, the assessment of safety of medicines, the balance of benefit and risk and health economics.

The "European Patients' Academy on Therapeutic Innovation" project is receiving support from the Innovative Medicines Initiative Joint Undertaking under grant agreement n° 115334, resources of which are composed of financial contribution from the European Union's Seventh Framework Programme (FP7/2007-2013) and EFPIA companies.

Rob Camp (rob.camp@patientsacademy.eu)

Gertrude Buttigieg (mt-nltteam@eupati.eu) Rob Camp and Gertrude Buttigieg


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