EFA - Annual Report 2023

Atopic Eczema Consensus Europe: communicating the burden of Atopic Eczema

In 2023, EFA worked on the dissemination of the 2022 Atopic Eczema Consensus Report, focused on the burden carried by patients. We translated the report into 10 EFA languages to enable the message spread at national level by EFA members’ community. As the report contains a series of key policy recommendations to the national healthcare systems, we also developed a published a “Call to action on the burden of atopic eczema”, and we started the translations into 10 languages.

To maximise the impact of EFA’s consensus project and promote the recommendations to achieve changes in national healthcare systems, EFA coupled the report with a European Atopic Eczema Toolkit addressed to the national level, that will also be translated in at least 10 EFA languages in 2024.

At the end of 2023, EFA was awarded with an additional unrestricted grant, to enable further national action within the EFA Members’ community. The funds will help catalysing the recommendations as they will allow EFA to provide members with specific grants for national atopic eczema advocacy making use of the European consensus materials (report, call to action and advocacy toolkit).

The 2022 European Consensus Report on the Burden of Atopic Eczema was translated into Bulgarian, Danish, Dutch, French, German, English, Portuguese, Slovenian, Spanish, Serbian and Turkish.

In October 2023, a delegation of two EFA representatives attended the European Academy of Dermatology and Venereology (EADV) Congress in Berlin. EFA held a booth in the Patient Organisation Area, where we presented the report to visiting patients’ representatives and healthcare professionals. We presented our #AtopicalLives multimedia exhibition, bringing to the centre the challenges of adult and child patients living with the burden of atopic eczema to the scientific congress. For more information about our collaboration with EADV, please visit the partnerships section.

During EADV, we launched a social media campaign with nine posts on X, which gathered +2,500 organic views and +1,700 impressions, and one on LinkedIn, which generated +600 organic impressions and +140 link clicks. As part of that action, we launched a video playlist with EFA recommendations on how to improve the diagnosis and care for patients living with atopic eczema. The seven videos, ‘The Burden of Atopic Eczema – A message to European policymakers’, feature several members of the EFA’s European Consensus Committee, and collected +400 organic views.

EFA presented the European Consensus Report 2022 on the burden of atopic eczema to the physical and online exhibition of EADV 2023.

GUIDE Asthma

GUIDE Asthma is a project lying at the heart of EFA’s mission to improve access to timely, accessible, and patient-centred care for allergy, asthma, and COPD patients in Europe.

In 2023, EFA published AboutAsthma.org, an educational source that provides science-based information and tips to patients and carers around five areas: asthma symptoms, attacks, care, life with asthma, and help. The content has been developed in close collaboration with healthcare professionals and members of the EFA Allergy and Asthma Working, and it is based on the 2022 Global Initiative for Asthma (GINA) Strategy Report.

Through this project, for the first time, the very latest knowledge arising from international guidelines is accessible widely to European and global asthma patients and carers.

The website puts asthma science and patients’ experience at the centre of its content. It is also open for scientific input and patient feedback about asthma, through a contact form. The website is available in English and will be translated into more languages in 2024. It received 1,100 website views around the time of the launch.

The website AboutAsthma.org was launched through a mailing sent on World Lung Day to +1,400 recipients with an average opening rate of 30%. We also promoted the new website through a social campaign around the #AboutAsthma hashtag which was mentioned +20 times on EFA Social Media channels, gathering +210,000 organic views.

Importantly, we presented the AboutAsthma.org website through a specific live webinar ‘Sharing is Caring: Exchanging Knowledge on Asthma Care', on the 25^th of September 2023, World Lung Day. The webinar, organized in collaboration with the Global Allergy and Airways Patients Platform (GAAPP), welcomed +100 attendees from more than 20 different countries around the world to build on the need for better access on educational information about asthma with expert speakers and patients from Ukraine, Nigeria, and Bulgaria.  

“Many patient organisations in Europe report that people do not have access to online educational resources to support them on their condition. AboutAsthma.org seeks to provide asthma patients and carers access with a source of reliable, patient-centred, and comprehensive information around asthma.”

EFA President, Marcia Podestà on the launch of the website.

 

Thank you!

EFA warmly thanks:

• the members of its Allergy and Asthma Working Group for providing insights throughout this project.
• Dr Helen Reddel, for reading a draft of the content of the patient guide and for providing advice relevant to accuracy of medical statements.
• the Global Allergy and Airways Patients Platform (GAAPP) for their collaboration with EFA in launching this website.
• the main writers of the educational content on the website from Scientific Communication SRL, for their contribution to making information about asthma accessible and comprehensive for patients.

COPD Standards of Care

Chronic obstructive respiratory disease (COPD) is one of the most common long-term respiratory conditions and the third leading cause of death worldwide yet “more than half of COPD patients surveyed in EFA’s research believe that COPD does not get enough attention compared to other diseases”. Ten years after the publication of the EFA book on ‘Minimum Standards of Care for COPD Patients in Europe’, in 2023 EFA launched a project to investigate if and how the minimum standards identified in 2013 had been met and identify areas for future improvement, to “raise the bar”.

For that, EFA launched a survey among EFA Members to gather information about the current standards of care for COPD and to investigate how the care of COPD patients has changed over the last decade. The survey was designed based on the data used in 2013, and we added two new sections on COVID-19 and digital healthcare, to investigate if they have an impact the COPD care. Through 26 questions, the survey covered different areas, such as disease awareness, prevention, diagnosis, access to care, rehabilitation, QoL and patients’ empowerment. Members also had the opportunity to highlight successes, gaps and best practices on COPD legislation and services at national level.

EFA thanks warmly the 10 EFA Members participating in the COPD survey:

EFA provided financial support to the members who took the time to answer the survey and give feedback on the current situation in COPD care in their countries.

As an EFA COPD community priority, in 2023 we organised four meetings of the project, including a presentation during the EFA 2023 AGM, and two policy recommendation workshops, which gathered six EFA Members including one representative from EFA Youth Parliament.

We completed the first draft of the report in December. The report will be published in 2024 alongside translations in 12 EFA COPD Members languages. It will serve to empower the respiratory patient community with the evidence and recommendations necessary to urge health authorities for improved COPD prevention and care.

DIG_IT 2.0: The asthma and COPD patient’s digital journey

As part of EFA’s DIG_IT project, in 2023 we launched our first ever prize! EFA Patients' Digital Prize recognises achievements in the digital health sector that centre asthma and COPD patients’ needs from development to implementation. This means recognizing companies who invite patients to set the priorities for research to ensure that new technologies address patients’ unmet needs identified by patients.

In January, we launched a call to find developers whose digital technology breaks down barriers in equity, promises security, and looks beyond controlling asthma and COPD and towards improving Quality of Life (QOL). Despite being a new recognition, we received 11 submissions from digital developers (academia, SMEs, startups), showing the interest of the digital sector to involve the patient’s community and the importance of put patients at the centre of their digital solutions.

We set up a prestigious jury who went through the functioning and content of the tools that were submitted, and to how the innovators introduce the approaches of co-creation and digital partnership between patients, healthcare providers and solution developers. The winners were invited to the award ceremony in presence of EFA’s members on April 27, in Ghent (Belgium). They benefit from structured exchanges with the asthma and COPD patient community in Europe. The ceremony was streamed online and followed by more than 100 people in a hybrid form. A recording of the event has been published in EFA’s Youtube channel.

EFA Patients Digital Award 2023-2025

Announcement of the EFA Patients' Digital Prize Winners, from left to right, Myles Murray, PMD Solutions, Johanna Edoff, Medituner (AsthmaTuner), Helen Parrott, NuvoAir.

Thanks to this recognition, the awarded companies have been recognised by patients at European level as forward thinkers, engaged in empowering people with asthma and COPD to improve health outcomes, and key digital health partners. The companies are recognised until December 2025 with an EFA Digital Award seal.

Thanks to the members of the EFA Patients Digital Award jury!

• Asthma patient’s representative: Armando Ruiz, International Manager at Spanish Federation of Respiratory Diseases Patients Associations (FENAER), EFA Board member and DTx Club founder
• COPD patient’s representative: Anne Elisabeth Eriksrud, Secretary General at Norwegian Asthma and Allergy Association (NAAF)
• Young patient representative: Eibhilin Doherty, Member of the European Allergy & Asthma Youth Parliament
• Healthcare professional: Richard Pratt, General Practitioner & Digital Health Advisor
• Industry expert: Tino Marti, form ETHEL Secretariat and eHealth Project Manager
• EFA Sustainable Corporate Partner: Susanne Brandl, Global Patient Partnership Principal Director at Roche