© 2013 European Lung Foundation
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Created and delivered by a partnership between ELF (European Lung Foundation) and NIHR (National Institute of Health Research) CLAHRC (Collaboration for Leadership in Applied Health Research and Care) for Leeds, York, Bradford.

European Patient
Ambassador Programme

Welcome to the European Patient Ambassador Programme

Do you or someone you care about have a condition that you wish more people understood? Have you had a good experience with a doctor or nurse that you want to share to improve other peoples' care? Have you heard about a change in policy or law that you think is wrong or unfair and would like to have your say?

Being a patient representative and speaking up for people with your condition can make a huge difference to how healthcare is delivered in the future.

As a patient or carer, you have a unique perspective on the impact of a condition on life, work and family. This experience is invaluable to healthcare professionals and researchers.

It can be very daunting trying to influence healthcare and research, but this online programme introduces you to some of the skills and knowledge you may need to successfully represent yourself and others.

Once the programme is completed, you will be able join an online community of Ambassadors, enabling you to discuss shared experiences and receive information on opportunities to influence healthcare activities.

Please click on the course overview on the left-hand menu to read more about this programme, why it was developed and how it could benefit you.

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EPAP Wiki

Welcome to the European Patient Ambassador Programme

Thank you for registering and welcome to the European Patient Ambassador Programme (EPAP).

You can access the EPAP Wiki at any time by clicking on the button above. The Wiki will be updated frequently with new and useful information not found within the modules so it may be useful to check this area each time you log in.

EPAP Wiki

Welcome to the European Patient Ambassador Programme

This screen details your progress. As you work through the modules your progress will be recorded below so you can check which you still need to complete.

Once you have completed all of the modules, you will be able to print your certificate and access the EPAP forum.

You can access the EPAP Wiki at any time by clicking on the button above. The Wiki will be updated frequently with new and useful information not found within the modules so it may be useful to check this area each time you log in.

Forum EPAP Wiki

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EPAP forum

Welcome to the EPAP forum. We hope that you will find this a useful resource.

Using the EPAP forum is straightforward. To create a new topic, click on the 'Add topic' button within a category on the forum home page. Before starting a new topic, please try searching the forum to ensure a similar topic does not already exist.

Click on a topic to display the discussion. To contribute to a discussion, please complete the form at the bottom of the page and click 'Submit'.

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Raising awareness
Improving local services
Fundraising activities
Research
Policy
Media
Other

My Details

Raising awareness
Improving local services
Fundraising activities
Research
Policy
Media
Other

Contact us

What is the European Patient Ambassador Programme?

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

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 number of ways patients and carers can help change the way a condition is managed.

Click on a link below to find out more:

Who is the programme aimed at?
How will it benefit me and others?
What is a patient ambassador?
How is it delivered?
How is the programme structured?
Contributors

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

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.

The programme is currently in English but can be used by people across Europe with any condition to influence healthcare from local to European levels.

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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
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What is a patient ambassador?

As a patient ambassador, you can represent others living with a condition, and share your experience of how a medical condition affects peoples' lives. Patients and carers are in the best position to suggest improvements and solutions to improve policies, healthcare decisions and the delivery of services.

There are many reasons why you may want to get involved in representation and become a patient ambassador. Here are a few:

  • Drive and enthusiasm to raise awareness about a condition or issue
  • Using a negative personal experience of healthcare to ensure more positive experiences for others in future
  • Motivation to give something back to your community or a patient organisation you work with
  • Drive to change the way people view a condition
  • Motivation to make others aware of the challenges faced by carers
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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'd 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 to anyone working with the European Lung Foundation or a partner of the NIHR CLAHRC
  • 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 once all six modules are completed.

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How is the programme structured?

The programme is structured over six modules:

  1. Becoming better informed
  2. Improving public awareness
  3. Improving treatment and care
  4. Supporting research and development
  5. Influencing health policy
  6. Interacting with the media

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 included at the start of every 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.

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Contributors

Steering group

  • European Lung Foundation (ELF) – Monica Fletcher (Chair and CEO Education for Health), Pippa Powell (Head), Sarah Masefield (External Relations and Project Development)
  • 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) – 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)
  • 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

Focus group, Leeds UK

A focus group of patients with a range of conditions were consulted to ensure that the programme is engaging, interesting and easy to use. The focus group consulted were members of LYB CLAHRC PPI network.

Industry support

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

  • Boehringer Ingelheim
  • Novartis
  • Almirall
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We rely on our authors to confirm the accuracy of the information presented and therefore we as the publisher, and our editors, cannot warrant its accuracy. Readers should be aware that professionals in the field may have different opinions. Because of this fact and also because of regular advances in medical research, we strongly recommend that readers independently verify facts. Ultimately it is the readers\' responsibility to make their own professional judgements. Description or reference to a product or publication does not imply endorsement of that product or publication, unless it is owned by OCB Media Limited and in which case is subject to the relevant disclaimers.

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What condition/disease do you have experience of?

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If yes, please name the organisation

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