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.
EFA ACCESS Survey
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.