AGITG 2017 Implementation v Innovation What rules in my world? - PowerPoint PPT Presentation

AGITG 2017 Implementation v Innovation – What rules in my world? Managing Patient Expectations in the era of Personalised Medicine Simone Leyden – The Unicorn Foundation twitter: @unicornfound #letstalkaboutnets

The Unicorn Foundation – Mission Support Advocacy Education Unicorn Foundation Research Awareness

International Neuroendocrine Cancer Alliance (INCA) “The global voice in support of all NET cancer patients” twitter: @unicornfound #letstalkaboutnets

What do patients expect from researchers and clinicians? Research Involvement Patient Support Resources/ services Information Treatment Centres Access to optimum care

Innovation v Implementation Case Study Making a real difference to the development of a new Medicine – Primary Sclerosing Cholangitis (PSC) - New drug development norUDCA already available drug UDCA - PSC Patient Group Europe contacted team norUDCA (Prof Michael Trauner – Gastroenterology and Hepatology at Medical University Vienna) for an interview to answer patient questions - Patient group consulted with 3000 members worldwide through social media forums which resulted in 10 questions added to interview - 20% of questions resulted in the actual taking of the existing medicine (difficulty in swallowing, does not affect everyone) - Question 1 was the medicine available in liquid form? No, due to shelf life and formulation - Question 2 anything to be done about the bitter taste of the pill? No, as it is a synthetic bile - Question 3 the large pills were like “sandpaper” to take due to the exterior texture? Yes! A coating on the pill could be done and for only 1 to 2 Eurocents per pill extra! - Success!

Managing Patient Expectations

Moving from Innovation to Implementation stage • E Health records • Registries • Embracing technology – Mobile apps • Mandating clinical trial recruitment Incentivising trial recruitment • • Utilising patient organisations

Engaging all Stakeholders without barriers • Public Awareness programs – clinical trials • Collection of real world evidence on compassionate access programs • Overcoming privacy, cultural and ethical barriers • Global Collaboration Patients Patient Government Organisations Healthcare Industry Professionals Researchers

What rules in my world?