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

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

Mar 02, 2024 199 likes •311 views

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

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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

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Unicorn Foundation

Support Education Awareness Research Advocacy

The Unicorn Foundation – Mission

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International Neuroendocrine Cancer Alliance (INCA) “The global voice in support of all NET cancer patients”

twitter: @unicornfound #letstalkaboutnets

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What do patients expect from researchers and clinicians?

Patient

Research Involvement Resources/ Information Treatment Centres Access to

  • ptimum

care Support services

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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!
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Managing Patient Expectations

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Moving from Innovation to Implementation stage

  • E Health records
  • Registries
  • Embracing technology – Mobile apps
  • Mandating clinical trial recruitment
  • Incentivising trial recruitment
  • Utilising patient organisations
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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 Organisations Healthcare Professionals Researchers Industry Government

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What rules in my world?