An online learning resource to help patients and carers gain knowledge, skills and confidence to actively engage in research, guidelines, advocacy and media activities.
- What is the European Patient Ambassador Programme?
- How does it work?
- Why become a Patient Ambassador?
- Further information
What is the European Patient Ambassador Programme?
The European Patient Ambassador Programme (EPAP) has been developed to help patients and carers across Europe understand how healthcare research and guidelines work, how to get involved and engage in advocacy and media activities at any level.
It is a unique programme as it is European, comprehensive, interactive, online and is relevant for anyone living with or caring for someone with any condition. It is aimed at anyone who is passionate about the patient experience in healthcare.
This new programme has been developed by the European Lung Foundation (ELF) with the NIHR CLAHRC (for Leeds, York and Bradford), a UK organisation that brings health research and clinical practice together, as well as with patient organisations and experts across Europe.
By creating a programme and developing a community of Patient Ambassadors the ELF, CLAHRC and other organisations across Europe aim to get patients more involved in influencing healthcare and political decision-making.
At every stage experts in healthcare, research and e-learning, along with patient organisations, patients and carer groups across Europe have been involved to influence the programme and ensure its value as a resource.
“This practical online resource focuses on helping patients’ to advocate for themselves and their families.
The fact that it will help me shape the future of healthcare for people with my condition is very exciting.”
Dan Smyth, (Sleep Apnoea Sufferer) General Secretary of the Irish Sleep Apnoea Trust
How does it work?
The programme has six modules, which the Patient Ambassador works through at their own pace. Animation, audio, and activities are used to support learning, but there are no tests or time limits.
The programme is designed for people to develop knowledge and skills to independently find information about conditions, and engage with research, guidelines, advocacy and media activities at various levels.
The core modules are:
|1||Becoming better informed||Work out what information is needed, find it, and record it in a clear and concise way|
|2||Improving public awareness||Understand how to develop a campaign / message that is focused on key issues and communicate it a variety of ways|
|3||Improving treatment and care||Understand how guidelines are developed and how you can get involved in them to improve treatment and care|
|4||Supporting research and development||Understand how clinical research is conducted and how to engage with other stakeholders to influence future research|
|5||Influencing health policy||Find out how health policy is developed and how it can be influenced. Apply skills acquired in other modules to engage with a range of stakeholders in influencing policy|
|6||Interacting with the media||Create media interest and understand how to interact with the media to communicate your message in a clear and authoritative way|
An Overview of the programme, Users’ Guide, Technical Support and Glossary are also provided to optimise use and understanding of the programme.
The programme is currently only available in English, although it has been designed to use plain language and explain technical terms to develop the patient ambassador’s understanding of key terms used in research, guidelines and media.
The course will also have additional resources to provide the most up-to-date and relevant stats and information.
“EPAP is a great opportunity to support you to use your experiences to influence research to improve health outcomes”
Lisa Butland, Associate Director NIHR CLAHRC
Why become a Patient Ambassador?
For a long time patients have wanted to be more involved with healthcare decision-making and now there is also a growing wish from healthcare professionals and policy makers to involve patients in many aspects of delivering better treatment and care.
Patients can identify issues that may be overlooked by healthcare professionals, highlight areas where the patient’s perspective differs from health professionals and ensure that research and guidelines address key issues of concern to them.
To be most effective at expressing the patient perspective, patients and carers need to have the core skills and knowledge that will enable healthcare professionals and policy makers to understand their key concerns.
The European Patient Ambassador Programme identifies those skills and helps you to develop them. The course also points you to resources to help you further your knowledge and expand your skills both during and after you have completed the programme.
Patient ambassadors will:
- Be encouraged to represent patients at local, national and European levels
- Develop the skills and confidence to interact with professionals, politicians and the media
- Be able to find reliable information about conditions
- Gain the skills to learn more about how healthcare works in their country and in Europe
- Develop the knowledge and skills to contribute to:
- raising public awareness of a condition
- improving treatment and care for people with a condition
- progressing and developing scientific and clinical research
The programme also hopes to:
- Bring together patient ambassadors by providing a forum and on-going updates
- Enable the development of a pool of people ready, willing and able to take part in activities such as input into guideline development, research projects, speaking at conferences about the patient perspective, and explaining concerns to policy makers and the media