From a diagnosis perspective, citizens heavily benefit from a healthcare system that grants access to high-quality healthcare professionals and services, and unleashes the full potential of knowledge. For asthma, allergy and COPD patients, the backbone of such a system requires the promotion of the education of both patients and healthcare professionals, the encouragement of scientific research on our disease areas, and the roll-out of the digital aspects of health.
Healthcare professionals’ training
Access of patients to well-trained professionals and effective healthcare services is of paramount importance for patients, as it facilitates timely and accurate diagnosis, as well as better decision-making in emergency situations. In addition, some patients suffer from chronic and/or severe conditions that require close, knowledge-based monitoring and long-term commitment by healthcare professionals.
Science-driven decisions
At EFA we believe that open, transparen, and evidence-based research is key in informing policy-making and enabling investment in healthcare innovation. As patient representatives, we are keen not only on producing patient-driven evidence to help patients meet their needs, but also on having the guarantee that the decisions affecting health are based on valid, impartial science. These are the principles we have promoted on a number of occasions, including in the context of the Horizon 2020 Scientific Panel for Health, and in the discussions on the next Framework Programme on Research and Innovation.
E-health
Digital Health has many benefits for patients. To start with, allowing access for healthcare professionals (HCPs) to patients’ health electronic records enables HCPs to picture patients’ health history.Therefore, this access help HCPS make timely and accurate diagnosis and better care decisions, creating more confidence and collaboration between patients and healthcare professionals. The collection of patients’ data also allows emergency teams to make the best decisions in emergency situations. Also, digital health permits patients and the healthcare community to easily manage chronic diseases by tracking and monitoring the disease on a daily basis. As a consequence, this contributes to healthcare cost reduction, more access in its broad sense and better health outcomes.
Still, there is an open debate on how to find the right balance between ensuring patients’ data confidentiality and how to make it available for public health, healthcare and research purposes, while ensuring ethical and confidential use of it.
EFA is a member of the EMA Digital Health task group
In particular, EFA’s work is currently focused in the following policy priorities:
- Adopt an EU strategy on chronic diseases with disease specific chapters;
- Strengthen patients’ safety, improve accuracy and quality of information to patients, boost health literacy and patients’ participation in decision-making;
- Ensure early and accurate diagnosis of allergies and chronic respiratory diseases through increased training for healthcare professionals, development of national programmes, registers and spirometry testing;
- Eliminate discrimination of patients based on their disease or condition;
- Ensure that more funds are allocated for EU health policy, programmes and prioritise investments in research of allergic and respiratory diseases.
EFA’s Director Susanna Palkonen is the chairperson of Patient Access Forum, a patient-led multi-stakeholder network bringing together patients, the medical and public health community, industry, and the European and member states policy-makers and institutions.