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Patient Evidence

EFA DIG_IT project

The early 2020s are a crucial moment in the short history of digital health. Three factors, the COVID-19 pandemic, forthcoming EU regulation on the infrastructure of health data, and the growing number of innovative technologies entering the health market, have together moved digital solutions centre stage. It is therefore time to dig deep on the impact, opportunities, and challenges of the digital revolution in healthcare.

The EFA’s Digital Information Technology (DIG_IT) Project aims to put patient voices at the heart of these conversations. In doing so, it paves the way to a patient-informed transformation of digital technology use throughout health services.

The evidence generated by this survey will inform forthcoming regulations and the continued evolution of a fast-moving field, and it will also serve to develop an EFA Charter for Digital Asthma and COPD Care.

From this strong foundation, EFA’s DIG_IT Project will build a framework for continued digitalisation in the respiratory conditions’ field.

Digital technologies are aimed at making healthcare more efficient, data-driven and patient-centred. Patients with asthma and chronic obstructive pulmonary disease (COPD) have indicated in EFA’s a willingness to embrace tools that empower them and improve outcomes DIG_IT survey. However, uptake of innovative devices and services has been slower in healthcare than in other sectors.

the DIG_IT report

The DIG_IT report: Asthma and COPD Patients’ Digital Journey in Europe

In addition to providing a deeper understanding of the benefits, barriers, and concerns around digital health, the project aims to develop insights into the patient digital journey in respiratory health.

By building on insights from the patient community, EFA will ensure that its positions reflect the current perspectives of the association’s members and patients it represents.

The DIG_IT survey findings have been translated into patient recommendations for policymakers, academia, and the technology sector.

The DIG_IT patient survey

The DIG_IT survey was conducted by the European Federation of Allergy and Airways Diseases Patients’ Associations (EFA) in the summer of 2021. It set out to capture the views of asthma and COPD patients on Europe’s digital future. The initiative surveyed close to thousand patients in five countries to understand their needs, perceptions, and use of digital technologies throughout their patient journey.

The DIG_IT survey covered:

  • 970 asthma and COPD patients surveyed
  • 5 European countries (Belgium, the Czech Republic, Ireland, Norway, and Spain)
  • 50 questions on access, diagnosis, treatment, care as well as their views on health data and digital empowerment

The participating countries were selected according to several criteria such as access to digital solutions, impact of COVID 19 on national healthcare systems, and with regards to a geographical representation of EFA’s European membership. In addition, EFA preferred to conduct the survey in countries where no much data on digitalisation in the respiratory area were available.

the DIG_IT questionnaire


The EFA’s DIG_IT Project, survey and survey report have been funded with unrestricted grants from EFA’s Sustainable Corporate Partners Astra Zeneca, Chiesi, MSD, OM Pharma and Roche. The EFA’s DIG_IT Prize is being made possible thanks to unrestricted grants from EFA’s Sustainable Corporate Partners Chiesi and Roche.

EFA thanks our Asthma and COPD Working Group of Members for their insights and vision throughout this project from their national perspectives.

EFA deeply thanks the 970 asthma and COPD patients who participated in the survey and the EFA Members for their advice and sustained support in this project.

Atopic March and Disease Correlation

Allergies and Asthma are often interlinked and might progress over the years. The term allergic or atopic march refers to the development of allergic conditions. Starting with atopic dermatitis, the atopic or allergic march progresses to lgE-mediated food allergy, asthma and allergic rhinitis. 

In recent science, the widely-accepted concept of the allergic or atopic march has faced some criticism. Nevertheless, certain diseases are without doubt closely linked and correlated, negatively impacting people living with allergies and airways diseases. 

Non-Communicable Diseases

According to the World Health Organization (WHO), non-communicable diseases (NCDs) caused 40.5 million deaths in 2016. Chronic respiratory diseases are among the four main NCDs, responsible for almost 10% of all NCD related deaths (beneath cardiovascular disease, cancer and diabetes). 

The WHO 2016 – 2025 action plan on non-communicable diseases in the European Region aims at their prevention and control. 

Allergy is the most common chronic disease in Europe. By 2025, half of all Europeans are assumed to be affected. Common allergens like pollen, house dust mite and certain foods lead to various reactions of diverse severity leading to big and costly negative consequences.

Asthma is a prevalent chronic disease triggered and exacerbated by genetic, allergic and external factors. In Europe, around 30 million people live with asthma. 

COPD is an umbrella term to describe chronic lung diseases that cause limitations in lung airflow. Tobacco smoke is the leading cause of COPD. 15-20%t of Europeans are affected. COPD is assumed to be the third leading cause of death by 2030.

Rhinitis is a common condition caused by allergies or environmental irritants. Symptoms include sneezing and post-nasal drip and may result in significant disturbances. Globally, more than 200 million people are affected, with the highest incidence of allergic rhinitis in children.

As recently stated by the Organisation for Economic Co-operation and Development (OECD), health systems measure their success by survival rates after treatment, mortality or hospital utilisations. 

However, very little is known about the patients’ experience. How do they feel and how is the health care provided impacting their lives? Since differences in the performance of health care systems can be small, what distinguishes them is the perception of patients and their impact on patient’s quality of life.

Multi-country studies to build patient evidence

EFA is regularly building patient evidence by means of questionnaires and surveys that investigate people’s experience of living with their disease. The focus thereof, in particular, lies on those areas that healthcare professionals often disregard while often being the most relevant issues for patients. 

All our surveys are multi-country studies and developed in collaboration with EFA members. Members express their priorities and needs on specific diseases or on healthcare services that are worth being investigated. Further, they support EFA in building cross-country questionnaires, translated into each country’s’ language. 

External support to guarantee high quality standards

To guarantee a valid approach from a statistical and scientific point of view, we collaborate with market research agencies specialising in health. The agencies support us in recruiting patients and submitting the questionnaire. The recruitment is often through physicians, to ensure that the patients have the correct clinical profile, while the interviews are done via phone. 

Once the agency has collected all the data and processed the results, EFA, under the guidance of medical and patient advisors, develops the final report. This gives a clear picture of the patients’ perspective and provides key facts for raising awareness and for advocating for better health. Often our reports include recommendations for healthcare professionals and policy makers.

Itching for Life: EFA Atopic Eczema Report

One of the most recent studies conducted with this methodology is “ITCHING FOR LIFE: Quality of Life and costs for people with severe atopic eczema in Europe”. This survey involved 1,200 patients with Atopic Eczema in nine European countries. 

The novelty of the study is that patients have been asked about their emotions. While this aspect is frequently discussed by patients in social media, however, it is never taken into consideration by existing validated tools. More information, the results of our survey and the new Atopic Eczema Score of Emotional Consequences (AESEC©) can be found here. 


In 2018, EFA developed a further questionnaire looking at what level of access patients experience when it comes to diagnosis, care, prevention, patient empowerment and research for asthma and COPD. People with asthma and COPD from seven European countries gave us an insight of what it means being a patient with a chronic disease seeking care. The results of the survey can be found here. 

#ShowLeadership: ACCESS Survey results as basis for European campaign

The ACCESS Survey provided sufficient patient evidence to build a campaign around the European Parliament elections in 2019. It shows patients and policymakers why it is important and how they can #ShowLeadership to the benefit of people living with chronic diseases.

Have you or a relative been (recently) diagnosed with a respiratory disease or an allergy? Despite the informational session you may have had with the healthcare professional, you might be looking for more answers. 

In this section you will find information especially designed for patients and carers, covering health literacy, patient rights and e-health. All the material has been integrated by European patient experts’ advocates from the EFA Patient Education Working Group.

The material comprises a varying range of topics from general information about the diseases to practical guides on more concrete topics. 

On asthma and COPD you will find courses on (self-) management, covering among other topics how to correctly use an inhaler, how to safely exercise with a respiratory disease and guides for caregivers.

On allergy, there are guides available for school teachers about allergic children’s needs. Additionally, there are manuals on materials-chemicals suitable for allergic patients. You will also find leaflets and brochures on allergy medication use and an emergency food allergy & anaphylaxis action plan.  

The materials are available in EFA members’ original language and are classified in this section to promote their use and dissemination among patients, practitioners and companies.

For more information please contact This email address is being protected from spambots. You need JavaScript enabled to view it.