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Published byShannon Manning Modified over 6 years ago
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Kerstin Morrison – ELF Betty Frankemölle - EPAP ambassador and member of Patient Advisory Group Amanda Roberts - EPAP ambassador and member of Patient Advisory Group
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Patient involvement needs to be effective
Patients and carers need to have skills and knowledge to make their involvement effective EPAP is the tool for well trained patients It is a free, online self-learning programme For any condition
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Skills and knowledge for effective patient involvement through different modules:
Becoming better informed Improving public awareness Improving treatment and care Supporting research and development Influencing policy Working with the media Becoming involved in a transnational research project
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The website and registration
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Registration/Log in
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Choose your modules
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Interactivity
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Case Studies
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Downloadable and printable content
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Resources Links to websites within the programme Resources section on the website
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Posting of opportunities on the website, Facebook and LinkedIn
Languages: English Dutch Italian
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Many organisations in and outside of Europe promote EPAP to their members
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Betty Frankemölle Volunteer with Longfonds, patient expert Worked for many years as a paediatric nurse in neonatal Has severe, difficult to treat asthma Member of the patient advisory group for EPAP Has helped with promotion of EPAP in Dutch in the Netherlands through a national umbrella organisation for patient to organisations Was recently involved in an IAPO EU project through EPAP
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Betty “In April 2013 I was asked to try the new online training programme for patients and carers. I became enthusiastic. On the first hand it looked very simple, but by following the questions it all appeared to be very helpful for a better coping with my own diseases: not only for my asthma but also for my intestine problems.“
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Betty “EPAP helped me to make a progress in the quality of my voluntary work for the Dutch Lung Foundation. I gained more knowledge among other things about research decision making. I also gained more self-confidence in doing my voluntary work.”
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Amanda Roberts:
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It depends on how you wear your hat
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Health skills Friends and family skills Cultural skills
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24/7 Service reality Multi-morbidity
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An imperfect world Job skills Non medical solutions
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Community life Colour can matter Young and old
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We all need champions Diversity and validity Nothing to me without me
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wwwEPAPonline.eu
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