Why become a patient ambassador?


There are many reasons why you might decide to get involved in patient and public involvement (PPI) and become a patient ambassador (patient representative), for example:

  • You are passionate about raising awareness of your condition.
  • You had a good or bad experience with a doctor or nurse that you want to share to improve the way a condition is managed in the future.
  • You have heard about a change in policy or law that you think is wrong or unfair.

As a patient or carer you have a unique perspective on the impact a chronic condition has on life, work and family, and you are in the best position to suggest improvements and solutions to improve policies, healthcare decisions and the delivery of services.
As a patient ambassador, you can represent others living with a condition and share your experience of how a chronic condition affects people’s lives.
As patient and public involvement (PPI) in healthcare grows, many more healthcare professionals are seeing the value of involving and engaging patients when writing guidelines, doing research, priority setting and making decisions about funding.
Read our factsheet on PPI to find out more about how speaking up for yourself and others can make a huge difference to how healthcare is delivered.

What is EPAP?


The European Patient Ambassador Programme (EPAP) is a free, online, self-learning programme that introduces patients and carers to some of the basic skills and knowledge needed to represent yourself and others successfully.
It is made up of eight different modules so you can choose those that interest you most.
EPAP is available in English, Dutch, French, Italian, German and Spanish.

The EPAP modules


The eight modules introduce you to the key ideas and terms you need to understand different areas of healthcare and become a successful patient representative. They are outlined below:

Module 1: Becoming better informed

Being well informed about your condition is the first step in effective representation. This module gives guidance on being better informed about your condition and helps you to access and handle information about your condition.

Module 2: Improving public awareness

This module helps you to understand your audience and prepare key messages that you wish to convey.

Module 3: Improving treatment and care

Module 3 explains how clinical guidelines, at a national and international level, affect the way healthcare is delivered. It also explains how guidelines are developed and how you can get involved in developing them to improve treatment and care.

Module 4: Supporting research and development

Module 4 is a guide to different types of medical research studies, including clinical trials of medicines, that are undertaken to develop treatments. The module also describes how you can get involved in medical research and development.

Module 5: Influencing policy

Public policies are the guiding principles put in place by governments and are used to help determine new laws. They affect all aspects of our lives – home, work, education, health, transport, housing and much more. This module provides information about how you can communicate with policy makers to influence policies that matter to you.

Module 6: Working with the media

This module gives an introduction to working with the media, the different types of media and how to use them. As a patient and user of healthcare services your experience is valuable and may be of interest to the media for news stories on healthcare. Explaining a story from a patient’s point of view can help to illustrate the effect of a service or treatment on an individual.

Module 7: Participating in scientific and medical conferences

Module 7 introduces you to how patients may attend and represent themselves and others at scientific or medical conferences, both at a national and European level. It also gives details about the different roles patients can play when attending a conference.

Module 8: International health research projects

The final module introduces you to getting involved in health research projects with a focus on those that are funded by the EU (European Union).

You can pick and choose which modules you are most interested in or work your way through them all. The total programme should take no more than 10 hours to complete. You can stop and start the programme when convenient to you and save your progress as you go along. A certificate is issued to you at the end of each completed module.

How do I get started?


Visit EPAP: https://elearning.epaponline.eu/
Select the language you wish to complete EPAP in, register your details, and get started with the module of your choice.

Could EPAP be a useful tool for your organisation?


If your organisation is interested in using EPAP and in signposting your members or service users to it, why not become one of our partners?
Advantages for your organisation include:

  • Your organisation logo will be included on the EPAP Partner page
  • Your organisation will have unlimited usage of the course
  • There will be an opportunity to post opportunities through ELF social media
  • The opportunity to input into updates of EPAP
  • The opportunity to receive notification of the number of people linked to your organisation that complete programme modules

What we ask partners to consider:

  • Regular, tailored communications about EPAP to your members/service users e.g. email, social media
  • Articles about EPAP in your newsletter or website
  • One-off EPAP training events
  • Presentation/flyer at your conferences or events
  • Link to EPAP from your website
  • Promotion through any additional channels appropriate to your organisation/members
  • Some partners have also worked with us to translate EPAP into other languages relevant for their own members/service users

How EPAP was developed

EPAP 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.
ELF originally developed EPAP to engage with patients ready and able to get involved in the future of respiratory healthcare. However, we worked with partners to ensure that the programme is suitable to people living with any chronic condition.
Regular reviews of the content take place.

Contact

If you have any questions about EPAP email EPAP@europeanlung.org

EPAP partner organisations


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