EUPATI fellow & patient expert, Switzerland
I aim to listen to all parties involved in medicines development: including patients, pharma, and academia. We need to listen to one another, paying close attention one another's needs and ambitions in order to achieve goals that are beneficial to all of us and to society at large.
Work in progress
EUPATI fellow & patient expert, Switzerland
Co-creation is where it is at. In the past, the lion share of investment in R&D was wasted (85%: redundant, inconclusive, duplicated or unpublished) and extraordinary numbers of trials failed or were incomplete (97%). What was missing? Patient collaboration, for starters. By co-creating, we can identify what patients actually need, value and want. Let's help meet public health needs by sharing our expertise.
Work in progress
EUPATI fellow & patient expert, Switzerland
Consulting with patients is something relatively new and radical. To turn it into something fruitful, creative, positive and productive, we will all need to communicate clearly and considerately.
Work in progress
Create effectives ways of communication and advocacy
Work in progress
Patient Engagement & Communication Officer
As a representative of EUPATI Luxembourg, our objective is to work in close collaboration with patients' organisations.
Work in progress
Patient Engagement & Communication Officer
As a scientific collaborator at the Department of Population Health in the Luxembourg Institute of Health, we regularly sensibilze researchers on the importance of patient-centric research. i tried to share with them good practices of the other countries.
Work in progress
Patient Engagement & Communication Officer
From 1997 until 2007, I worked for 10 years at Alzheimer Europe, a non-governmental organisation aiming to provide a voice to people with dementia and their carers. Alzheimer Europe is an umbrella organisation having around 30 member organisations all around Europe. As the Communications officer of this NGO, I was used to work in close collaboration with our member organisations and encourage them to become involved organisations. I also organised the annual conferences and, at the beginning, all invited speakers were only made up of international eminent experts. In 1999, we decided to invite a patient during the plenary session. It was the most interesting session I attended. Since this day, I am convinced of the importance of patient’s voice. Tis experience had a real impact on the way we conducted the projects after because the priorities of patients were included. Communicate with all stakeholders is my professional way of working!
Work in progress
Through NPO Malta, I am taking part on a national Radio programme educating patients and raising awareness of their rights as per the Patents Charter. Here I am giving the telephone numbers where the year can fell free to communicate with us and ask for any assistance where they need it and we work together with them to solve their problems which they may have.
Work in progress
Promote and faciliate early engagement with patient in Study protocol design; get feedback from patient on "easy-to-understand" ICF and Lay summary
Work in progress
