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EUPATI – European Patients’ Academy on Therapeutic Innovation: A novel pan-European initiative that is delivering a paradigm shift in empowering patients and the public to understand the medicines development process and how to contribute to it

2014 Conference

Abstract: We will provide an overview of EUPATI – European Patients’ Academy on Therapeutic Innovation – whose purpose is to develop a paradigm shift in empowering patients/public to understand the medicines development process and how to contribute to it through learning and development. Specifically to:

  • develop and disseminate accessible, well-structured, user-friendly information and education on medicines R&D
  • build expert capacity by training patient advocates
  • create the leading public library on medicines R&D

EUPATI-UK is a tri-partite collaboration led by a patient organisation (Oldfather-Chair), academia (Pavitt/Starling) and industry (Warner). EUPATI-UK’s mission is to ensure empowerment of patients and public to be effective advocates, advisors and contributors in medicines R&D.

“No research about us without us – Patients at the core of medical research and development”

We will describe EUPATI-UK’s role in the development of a network of stakeholders for the devolved countries to facilitate shared learning opportunities in medicines research and development, through dissemination and access to resources being developed by EUPATI across 3 levels:

  1. EUPATI Certificate Training Programme
  2. EUPATI Educational Toolbox
  3. EUPATI Internet Library

The ambition is to extend the scope of EUPATI-UK to cover medical innovation in preclinical and clinical research, to enable the delivery of patient-centered health research.

Learning outcomes:

  1. Empowerment from hearing how patients embrace the importance of having a voice in medicines development. Recognise the importance of how patient and public involvement (PPI) learning is key to underpin medicines development to ensure patient benefits are central to the research goal.
  2. Greater awareness of EUPATI-UK and how it complements existing learning opportunities – thereby we will have achieved effective publicity for EUPATI-UK and how to access training.

Issues for discussion:
Can EUPATI-UK as a national network contribute to a paradigm shift in empowering patients and the public to understand the medicines development process and how to contribute to it?

The role EUPATI-UK can play in access to and dissemination of quality training material.

Authors

Oldfather ~ Irene

Chair, EUPATI-UK Senior Management Committee and Director, Health and Social Care Alliance Scotland, an umbrella non-for-profit patient organisation reaching out to over two million people living with long-term conditions, their families and carers. Irene has a particular passions for supporting patients/carers whose lives are affected by Alzheimer's and Dementia.

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Pavitt ~ Sue

Co-Academic Lead, EUPATI-UK Senior Management Committee and Reader in Applied Health Research, University of Leeds. Her remit is to maximise cross-faculty translational research opportunities. In this capacity, she forges multi-disciplinary research partnerships between clinicians, academics, industry and patients; developing methodologically robust projects tailored to NHS priorities and with Patient Public Involvement (PPI) central to maximise patient benefit.

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Starling ~ Bella

Co-Academic Lead, EUPATI-UK Senior Management Committee and Director of Public Programmes at Nowgen, Central Manchester NHS Trust and University of Manchester, where she leads and directs Nowgen's work in public engagement, involvement and education as well as patient-focused research. Bella is a member of the Emerging Sciences Bioethics Advisory Committee (ESBAC), the Medicines and Healthcare Products Regulatory Agency's (MHRA) Patient and Public Engagement Expert Advisory Group and the North West People in Research Forum Executive Committee.

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Warner ~ Kay

Industrial Lead, EUPATI-UK Senior Management Committee and Global Manager, Focus on the Patient, GlaxoSmithKline (GSK). Kay Warner leads GSK's global programme Focus on the Patient to raise industrial awareness of patient needs and inspire them to put the patient first in medicines R&D. She works closely with patients, carers, patient advocates and patient organisations to realise her passion that strengthens the patient voice in medicines R&D.

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