The European Patients’ Academy (EUPATI) is a pan-European project implemented as a public-private pa...
My "real job" is working in the communications team at the Swiss Clinical Trial Organisation (SCTO), Bern, but I am also a patient advocate for endometriosis. These roles are very complementary, in content and spirit, enabling me to grow in knowledge and advocacy skills. For the past nine years, I've been involved in endometriosis awareness and activities with patient organisations (in Italy, the USA, and Switzerland), with healthcare providers and in diverse online patient forums.
In 2016, I completed the training for "Patient Experts in Medicines' Research & Development" run by the European Patients' Academy (EUPATI), making me a Eupati fellow. Since then, I serve on the Executive Board of EUPATI Switzerland, also contributing to their communications activities and social media. I have done consulting with pharma companies on language accessibility and communicating clearly to patients, patient peer reviewing for the British Medical Journal, and various types of panel participation requiring an informed patient perspective.
Join Eupati Switzerland on facebook at https://www.facebook.com/Eupati.Switzerland/
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|Contact me for||Opportunities for patient engagement collaborations , Speaking opportunities , General partnerships , Good case practice sharing , endometriosis, accessible patient information, health literacy, benefits and risk communication, digital health, informed consent, dynamic consent|
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
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 In the past, the lion share of investment in R&D was wasted (85%: redundant, inconclusive, duplicated or unpublished) and extraordinary numbers of trials failed or were incomplete (97%).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
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