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Course overview

The European Patient Ambassador Programme (EPAP) is a self-learning programme introducing patients and carers to the essential skills and knowledge needed to interact with healthcare professionals, policymakers, researchers and journalists.

It was developed by the European Lung Foundation (ELF) and the NIHR CLAHRC for Leeds, York and Bradford, with the help of patients, and professionals with expertise in key areas.

By acting as a representative, and getting involved in a range of ways, patients and carers can help change the way a condition is managed.

  • Who is the programme aimed at?

    The programme is aimed at:

    • People with experience of a condition as a patient or carer
    • People who are interested in how their condition is treated or managed
    • People interested in new research into their condition
    • People who want to influence policy around their condition at local, national or European level
    • People interested in working with the media or using social media to raise awareness of their condition
    • People who are interested in attending and speaking at conferences

    You may wish to get involved in representation because you are passionate about raising awareness of your condition; or perhaps you had a poor or good experience and want to help change the way a condition is managed.

  • How will it benefit me and others?

    People who have completed the programme will:

    • Know how to find more information about their condition
    • Understand how decisions about healthcare are made
    • Understand key terms related to different healthcare and research activities
    • Be more confident in exploring their ideas and identifying the best ways to achieve their aims
    • Have the knowledge to interact with professionals, politicians and the media
    • Be able to interact with other people on the programme to support each other
    • Be ready to take part in activities such as input into guidelines, research projects, speaking at conferences, and explain their concerns to policy makers and the media
  • How is the programme delivered?

    The programme will introduce you to the key ideas and terms needed to understand areas of healthcare. Further materials are provided both during and at the end for those who would like to study a topic in more depth.

    The programme is:

    • In English – with the hope of further translations in the future
    • Online – in the form of an interactive system
    • Modular – so that you can choose what interests you most
    • Flexible – you can stop and start it when it is convenient for you, as long as you finish it in 12 months
    • No longer than 10 hours in total and you will also be able to see your progress
    • Free of charge 
    • Accessed via registration so that we can help you get in contact with others with your condition and let you know of any representation opportunities that may be of interest

    A certificate will be issued at the end of each completed module.

  • How is the programme structured?

    The programme is structured over seven modules:

    1. Becoming better informed
    2. Improving public awareness
    3. Improving treatment and care
    4. Supporting research and development
    5. Influencing policy
    6. Working with the media
    7. Participating in scientific and medical conferences

    You can pick and choose which modules you are most interested in, or work your way through them. The total programme should take no more than 10 hours. You can stop and start the programme when convenient to you and save your progress.

    We have also included a section called 'Getting started', which gives basic information about using the programme. It explains how to use the programme, including how to use the menu, how to go to the different pages, and about the different activities. It is a separate module, so that you can easily refer back to it if you need to.

    There is also a link in the programme for you to contact us by email if you have any difficulties or questions.

  • Contributors

    Steering group

    • European Lung Foundation (ELF) – Monica Fletcher (past ELF Chair and CEO Education for Health), Pippa Powell (Director), Sarah Masefield (Patient Involvement and Engagement)
    • National Institute of Health Research (NIHR) Collaborations for Leadership in Applied Health Research and Care (the CLAHRC) – Kate Hill, Lisa Butland
    • Irish Sleep Apnoea Trust (ISAT/current ELF Chair) – Dan Smyth
    • e-learning advisor – Nicholas Blackwell (OCB Media)

    Writers and editors

    • Rhonda Siddall (Patient Central)
    • Pippa Powell (ELF)
    • Lauren Anderson (ELF)
    • Sarah Masefield (ELF)
    • Kerstin Morrison (ELF)
    • Emma Thompson (ELF)
    • Jenni Ferguson (OCB Media)
    • Nicholas Blackwell (OCB Media)

    Expert advisors

    • Andrew Frith – Director Information Development, Information Centre
    • Neil Betteridge – Patient and Public Adviser, NHS Improvement; Vice President European League Against Rheumatism (EULAR), representing PARE (People with Arthritis and Rheumatism in Europe); Vice Chair, Chronic Pain Policy Coalition
    • Sara Twaddle – Director, Scottish Intercollegiate Guidelines Network (SIGN)
    • Hilary Pinnock GP – Clinical Research Fellow, Chair, International Primary Care Respiratory Group; Chair, ELF Professional Advisory Board
    • Pim de Boer – Director of Research, Longfonds
    • Susanna Palkonen – Executive Officer, European Federation of Allergy and Airways Diseases Patients Associations (EFA)
    • Nicola Bedlington – Director, European Patients Forum (EPF)
    • Karen Graham – Patient Involvement Officer, Scottish Intercollegiate Guidelines Network (SIGN)

    Reviewers

    • Liliya Belenko – FFAAIR
    • Shane Fitch – Lovexair Foundation
    • Leanne Metcalf – Asthma UK
    • Karleen De Rijcke – CF Europe
    • Alan Heywood Jones – Alpha Europe Federation
    • Dorrit Novel – ELF Patient Advisor
    • Bernard Fierens – ELF Patient Advisor and member ELF Council
    • Kjeld Hansen – member of ELF Council 
    • Nicola Cassidy – Irish Lung Fibrosis Association 

    Focus group, Leeds UK

    A focus group of patients with a range of conditions was consulted to ensure that the programme is engaging, interesting and easy to use. The focus group consulted consisted of members of the LYB CLAHRC PPI (Leeds, York & Bradford Collaborations for Leadership in Applied Health Research and Care Patient and Public Involvement) network.

    Industry support

    To support the development of the programme, the following companies have provided unrestricted grants:

    • Boehringer Ingelheim
    • Novartis
    • Almirall
  • Languages

    EPAP is currently available in English and in Dutch and we are very keen to translate the programme into other languages. We have had requests from patient organisations in Italy and in Canada to translate the course.

    Our next phase of translation will cover the following languages:

    • Italian - this will be available from August 2016
    • French - we are aiming for the end of 2016 

    If you would like to follow the programme in your own language and it is not on the list, please contact EPAP@europeanlung.org.