Bei einem Notfall knnen Sie berall in der EU aus dem Festnetz und dem Mobilnetz die kostenfreie Notrufnummer 112. Patients have been able \o input into all stages of ERS guidelines, such as identifying research topics, answering surveys to understand patient experiences or reviewing ERS documents and helping make lay versions for patients and the public.\ELF runs a number of patient prior\ty projects as a way of involving patients to help . My role as a policy manager was to form a focus group with the aim to providing the patient perspective on methods of real-world data collection and analysis. This website uses cookies to improve your experience while you navigate through the website. the European Union requires close cooperation between Member States to share experiences and good practices, lessons learnt, research outcomes, quality assurance systems, etc. Wenn Sie der Meinung sind, dass die auf dem Portal bereitgestellten Informationen ungenau sind, kontaktieren Sie uns bitte. What is the European Patient Ambassador Programme? The learning modules cover: Finding information. Patient ambassador activities Two patient advisory group (PAG) members, Amanda Roberts and Betty Frankemlle, presented a workshop on the benefits of EPAP at the ELF patient organisation networking day at the ERS International Congress in London in September. 3 A Patient Ambassador will be provided with your information and will contact you. European Patient Ambassador Programme (EPAP) government site. Breathe articles are open access and distributed under the terms of the. FOIA Our core content on Lung conditions and related factsheets has been translated to a number of other languages. It was a pleasure meeting and working with the patient ambassadors and I truly hope to collaborate with them again soon. https://www.epaponline.org/what-is-epap/course-overview/. email, social media, Articles about EPAP in your newsletter or website, Presentation/flyer at your conferences or events, Promotion through any additional channels appropriate to your organisation/members. The first meeting of this kind, held during the ERS International Congress 2015, in Amsterdam, was attended by organisations from four continents. Our core content on Lung conditions and related factsheets has been translated to a number of other languages. Your organisation logo will be included on the EPAP Partner page, Your organisation will have unlimited use of the course, You can 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, Regular, tailored communications about EPAP to your members/service users e.g. ELF has a role here to produce educational materials that are adequate for each setting and adapted to the communities that are being targeted; taking its materials from a local level to a global level. You can unsubscribe at any time. Necessary cookies are absolutely essential for the website to function properly. But opting out of some of these cookies may have an effect on your browsing experience. Sites will include Waltham Forest, Canary Wharf, Camden, Lewisham and Islington. It focusses on four key themes to raise awareness of the best ways we can keep our lungs healthy. Therefore, there are a number of projects run by a range of organisations that have introduced stoves that issue less smoke. We also had ambassadors attending from the Netherlands and Portugal and Italy. The Wellcome Trust Clinical Research Facility Patient Advisory Group welcomes new members at any time. Out of these cookies, the cookies that are categorized as necessary are stored on your browser as they are essential for the working of basic functionalities of the website. Patient Public Involvement Bursaries are back! The new Asthma UK Centre for Applied Research is looking for people affected by asthma to join their Patient Advisory Group. EPAP is a free, self-guided e-learning programme introducing the essential skills and knowledge needed for patients and carers to interact with healthcare professionals, policymakers, researchers and journalists. Implementation science is a method that can be used to assess the feasibility of using research findings in routine healthcare in clinical settings in different parts of the world. Start the programme now: https://elearning.epaponline.eu @ACRPDC" Today is #ClinicalTrialsDay! ' - Information about lung health in Ukrainian. You have heard about a change in policy or law that you think is wrong or unfair. EPAP abbreviation stands for European Patient Ambassador Programme. Lindsay van der Linden, who is part of the ERS Spirometry Driving Licence team and is based in Africa said of the event: I am very excited about what this will mean in assisting promoting lung health and the use of spirometry on this side of the world.. Bethesda, MD 20894, Web Policies Look after your lungs with Healthy Lungs for Life! 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. This work by European Lung Foundation is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License. The European Patient Ambassador Programme (EPAP) is a free online learning resource developed to help patients and carers gain the knowledge and confidence to get involved in lots of different areas of patient involvement. Federal government websites often end in .gov or .mil. A co-led training programme to support patients to take on key roles in teaching and advancing active patient and public involvement February 22, 2021 A core part of all its activities focus on education: the education of patients on their condition, including how to prevent, treat and manage it; the education of healthcare professionals on how to improve work with patients and awareness about the issues that are important to patients; and education of the public and policy makers of the impor. There are many reasons why you might decide to get involved in patient and public involvement (PPI) and become a patient ambassador (patient representative). The patient ambassadors who took part in the focus groups were very quick to fully understand the nature and dynamics of the research process. 4 votes. So, FRESH AIR can see if pulmonary rehabilitation alone can make a difference to their lives. PDF European Lung Foundation: from local to global ' - Information about lung health in Ukrainian. PDF The European Patient Ambassador Programme (EPAP) In many of the communities it is so normal to have symptoms such as cough or breathlessness that few people report them to the health services, or make the connection between the smoke they breathe and how they feel. We have also included a section called 'Getting started', which gives basic information about using the programme. European Patient Ambassador Programme Our free, online, self-learning programme that introduces patients and carers to some of the basic skills and knowledge you may need to represent yourself and others successfully. Europe is the focal point; but, as presented in this article, ELF has actions at very local and distinctly global levels. The session offers an overview of medicines evaluation, with specific emphasis on when and how to get involved. However you may visit Cookie Settings to provide a controlled consent. We are excited to have now re-launched EPAP in all languages English, Dutch, French, Italian and Spanish with a new user-friendly platform, fresh design and updated sections. So, I contacted one of our partner organisations, the European Lung Foundation, to ask whether they had any patients experienced enough to join the focus group. Our Brussels office enterprise number is 0738.383.695 Find out about projects we have worked on in the past that have now ended. This field is for validation purposes and should be left unchanged. 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. Develop the knowledge and skills to contribute to: improving treatment and care for people with a condition, progressing and developing scientific and clinical research, 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. In this article we will focus on initiatives that have involved the European Lung Foundation (ELF; www.europeanlung.org). This website uses cookies to improve your experience while you navigate through the website. Here you can read about what they did and what they learned. Visit EPAP: https://elearning.epaponline.eu/. The project aims to provide insights into mechanisms of response and non-response to treatment across different diseases. 2 people joined by Skype as well. Preparations for another first are underway too a face to face meeting for the members of the PAG in spring. HLfL seeks to reduce the number of people suffering from respiratory disease by raising awareness and knowledge of lung conditions and the ways to prevent lung damage. ELF carried out a survey of patient organisations that attended the first meeting of the ELF International Patient Advisory Committee and a number of issues of importance were highlighted. This work by European Lung Foundation is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License. sharing sensitive information, make sure youre on a federal GB 115 0027 74) and charity (no. This field is for validation purposes and should be left unchanged. European Patient Ambassador Programme (EPAP), About task forces and clinical research collaborations, List of task Forces and clinical research collaborations, The European Patient Ambassador Programme. EMA holds an annual one-day training session for patients and consumers involved in EMA activities. Freedom of information publication The advantage of the European Patient Ambassador Project for my organisation Antonio Ciaglia, Policy Manager at IAPO. 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. Which language has EPAP already been translated into currently? Global status report on noncommunicable diseases. Using a hands-on, interactive approach, participants learn about how they can contribute to scientific advice procedures, scientific-advisory-group meetings and reviewing information for patients. In the end, however, it turned out that people didnt want the chimneys because they believed ghosts would use them to enter the house; cooking under canopies outside the house turned out to be a much more viable solution. Training and resources for patients and consumers | European Medicines To support the development of the programme, the following companies have provided unrestricted grants: EPAP is currently available in English,Dutch, French, Italian, German and Spanishand we are keen to translate the programme into other languages. 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. It explains all stages from initial research to patient access, including how EMA supports medicine development, assesses the benefits and risks and monitors the safety of medicines. The training took place alongside the Pan African Thoracic Society (PATS) Congress, which was held in Nairobi, Kenya, on April 912, 2016. The workshop was run by Prof Refiloe Masekela and was very successful, with 32 healthcare professionals trained in how to perform lung function testing. Our 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. See www.theipcrg.org/freshair/work-packages/wp-5-improving-diagnosis-and-treatment for more about the interventions. There are many different and varied patient organisations at local, national and international levels. It gives patients and carers the opportunity to learn the skills and knowledge needed to interact with healthcare professionals, policymakers, researchers and journalists. Do you or someone you care for have a chronic condition? The idea that something which works in a small community or hospital in one town or country can be adapted and amended to have impact in other countries, continents and even across the globe. DRAGON will use artificial intelligence (AI) and machine learning to deliver a decision support system for precise coronavirus diagnosis using CT scanning. Conflict of interest P. Powell is an employee of the European Respiratory Society. In the highlands of Kyrgyzstan stoves are also used to heat the yurts that have to be kept closed for 8months of the year due to the cold. If you have any questions about EPAP email epap@ersnet.org. European Lung Foundation: from local to global - PMC We work hard to involve patients and the public in research, have your say. 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. European Lung Foundation (ELF) ELF Home European Lung Foundation[uk], Work out what information is needed, find it, and record it in a clear and concise way, Understand how to develop a campaign / message that is focused on key issues and communicate it a variety of ways, Understand how guidelines are developed and how you can get involved in them to improve treatment and care, Understand how clinical research is conducted and how to engage with other stakeholders to influence future research, Find out how health policy is developed and how it can be influenced. 635 people from all over Europe have already registered. 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. Arzt- oder Krankenhausbesuch im Ausland - Your Europe the types of activities patients and consumers are involved in. Involvement of patients in scientific advice procedures at EMA, Involvement of patients in Scientific Advisory Group and Ad Hoc Expert meetings at EMA. The learning modules cover: Visit the EPAP website for more information and to register. The full text is available as a Behandlung von Patienten aus dem Ausland | Info Praxisteam EPAP is available in English, Dutch, French, Italian, German and Spanish. 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. As a patient ambassador, you can represent others living with a condition and share your experience of how a chronic condition affects peoples lives. These cookies will be stored in your browser only with your consent. It was interesting to see how many key topics were felt to be priorities from organisations in diverse parts of the world. Looking back at how the whole process went, I couldnt agree more! ELF is a non-profit organisation registered as a UK company (VAT no. 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. This new programmehas been developedby theEuropean Lung Foundation (ELF)with theNIHR 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. The International Alliance of Patients Organizations represents 277 patient organisations across 71 counties in 51 disease areas, representing, according to recent figures, 365 million people. 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. As well as having the opportunity to use Trafalgar Square as an attention-grabbing act, these clean air bubbles will do a tour of a number of locations across London to ensure that the target audience for HLfL is reached. What set the participants apart was their ability to adapt to the tasks and to identify which things were important and needed to be pointed out in the research project. Sign up to our free monthly newsletter to get the latest information and research news on lung conditions, plus views from experts and patients! 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. In Athens, Greece, ERS Vice President, Dr Mina Gaga, and members of the Hellenic Thoracic Society organised an HLfL event at the Athens Authentic Marathon in November 2015. Course overview | EPAP Developing better internet and social media skills. As a patient/carer you have a unique experience of how this condition impacts on daily life. Maintaining links with European and international organisations. The European Patient Ambassador Programme identifies those skills and helps you to develop them. European Lung Foundation on Twitter: "Today is #ClinicalTrialsDay You can unsubscribe at any time. SC005336, VAT Registration Number GB592950700, and is acknowledged by the UK authorities Sign up to our free monthly newsletter to get the latest information and research news on lung conditions, plus views from experts and patients! Learn about the factors that can cause lung disease and the ways to reduce your contact with them. Partners | EPAP It is a separate module, so that you can easily refer back to it if you need to. European Patient Ambassador Programme - YouTube There is much still to be done to develop patient groups across Europe, and to learn best practices in patient involvement. ELF is a non-profit organisation registered as a UK company (VAT no. Please register to take one or multiple modules and let us know what you think. They told me about their European Patient Ambassador Programme and they contacted all their ambassadors, who had completed their module on research and development. Our core content on Lung conditions and related factsheets has been translated to a number of other languages. Because of that, they fitted into the focus groups successfully and were able to put their views forward in a very effective way. Dr Gaga commented: The event went very well: it was a huge celebration of the ability to play sports and be active, and taking control of your life.. The focus group consulted consisted of members of the LYB CLAHRC PPI (Leeds, York & BradfordCollaborations for Leadership in Applied Health Research and Care Patient and Public Involvement) network. European Lung Foundation's TR ID number in the Transparency Register is: 094039644810-79. 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 ambassadors understanding of key terms used in research, guidelines and media. An Overview of the programme, Users Guide, Technical Support and Glossary are also provided to optimise use and understanding of the programme. Our Healthy Lungs for Life campaign is aimed at everyone whether you have a lung condition or not. Other disclosures can be found alongside this article at breathe.ersjournals.com, National Library of Medicine In September 2015, HLfL funded a spirometry training event for healthcare professionals in Kenya. Giant bubbles will be constructed representing clean air bubbles. The guidance below has been developed by patients and includes their guidance for healthcare professionals. European Patient Ambassador Programme (EPAP) in German went live on Learn more about life with a lung condition and things you can do to improve your quality of life. 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 European Patient Ambassador Programme (EPAP) provides patients, carers and professionals with some of the skills and knowledge needed to learn how to represent themselves and . There is also a link in the programme for you to contact us by email if you have any difficulties or questions. Home | EPAP For more languages explore all available Factsheet translations. Research has shown that those solutions can differ for each country, so it is important to ask the population to contribute ideas and to give them a greater say in the matter. The information helps interested patient and consumer representatives to understand: EMA has published a training overview describing the activities and materials available to patients and consumers taking part in EMA activities and events. Sign up to our free monthly newsletter to get the latest information and research news on lung conditions, plus views from experts and patients! As ELF moves forward, we hope to develop our global links and activities in line with the ERS membership strategy, and to ensure that respiratory patients worldwide can have a voice and improve their care and the care of others in the future. Apply skills acquired in other modules to engagewith a range ofstakeholders in influencing policy, Create media interest and understand how to interact with the media to communicate your message in a clear and authoritative way. Jegliche Behauptungen, Statistiken, Angebote oder andere Arten der Prsentation des Produkts sollten vor dem Kauf vom Hersteller besttigt werden. Creative Commons Attribution Non-Commercial Licence 4.0, www.theipcrg.org/freshair/work-packages/wp-5-improving-diagnosis-and-treatment, www.erswhitebook.org/chapters/patient-organisations-and-the-european-lung-foundation/, www.europeanlung.org/en/get-involved/european-patient-organisation-network/, http://pgosupport.nl/page/Nieuws-1/Online-cursus-ondersteunt-patientvertegenwoordigers-met-nuttige-kennis?mod%5bPGO_NewsModule%5d%5bn%5d=908, www.who.int/nmh/publications/ncd_report_full_en.pdf, Asociacion Nacional de Hipertension Pulmonar, FederASMA e ALLERGIE onlus Federazione italiana pazienti, Global Allergy and Asthma Patient Platform, Japan Federation of Patient Organisations for Respiratory Diseases, The Brazilian Lymphangioleiomyomatosis Association (ALAMDRA), To identify the specific factors that influence the implementation of evidence-based interventions in the prevention and treatment of non-communicable lung diseases in community settings. The European Patient Ambassador Programme. Look after your lungs with Healthy Lungs for Life! Abbreviation is mostly used in categories: Medical Research Medical Health. A patient organisation is defined by the European Medicines Agency as a not-for-profit organisation that is patient focused, and whereby patients and/or carers represent a majority of members in governing bodies. Two patient advisory group (PAG) members, Amanda Roberts and Betty Frankemlle, presented a workshop on the benefits of EPAP at the ELF patient organisation networking day at the ERS International Congress in London in September. Many organisations will use national awareness days to hold an HLfL event and disseminate the HLfL messages. Website features. Second, it will use interventions, such as pulmonary rehabilitation, which now has a strong evidence base for its use for patients with chronic pulmonary disease, and see how this can be used in countries with completely different healthcare systems, community structures and beliefs: We are mapping out the impact of tobacco and indoor biomass smoke on peoples lung health in detail, but more importantly testing with local people how best to adapt existing solutions to their needs and context. Sin Williams, Executive Officer of the IPCRG. However you may visit Cookie Settings to provide a controlled consent. Patient ambassador support: Experiences of the mentorship between newly Animation, audio, and activities are used to support learning, but there are no tests or time limits. PDF EPF Recommendations for a patient-centred implementation Suggest. ELF developed its European Patient Ambassador Programme (EPAP; www.EPAPonline.eu) in order to make patients ready and able to get involved in determining the future of respiratory healthcare, giving training on how to find reliable information online about science and research, and giving information and advice on advocacy, press and media. As the patients who take part in the programme are required to be able to interact in English, the programme was first developed in English only. The European Patient Ambassador Programme (EPAP) is an online course that introduces patients and carers to some of the skills and knowledge you may need to . Out of these cookies, the cookies that are categorized as necessary are stored on your browser as they are essential for the working of basic functionalities of the website. However, in parallel to this more local activity and on the theme of local going global, ELF has been trying to develop links across the world by inviting patient organisations from outside of Europe who attend the ERS International Congresses to attend a meeting of respiratory patient organisations. This project Priorities This patient priorities project is all about highlighting what matters most to people affected by lung cancer. The European Patient Ambassador Programme (EPAP) is a free online learning resource developed to help patients and carers gain the knowledge and confidence to get involved in lots of different areas of patient involvement. 1118930). GB 115 0027 74) and charity (no. 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. ELF and ERS have worked with key UK-based professionals and patient organisations to select a theme for the campaign for 2016 that would be a hot topic in London and the UK and would also have relevance to those in different countries across the world: clean air. Connect With a Patient Ambassador | Axonics ELF works with a network of patients and patient organisations from across Europe in the field of lung disease. This has resulted in 40 organisations joining from 20 countries, including Ukraine, Portugal, Turkey, Belgium, Serbia and Macedonia. In voicing their views, all of the focus groups participants exhibited a high degree of awareness of the external constraints that patient representatives can encounter in promoting and supporting their causes. Advertisement cookies are used to provide visitors with relevant ads and marketing campaigns.
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