For patients living with chronic respiratory diseases (CRDs) such as chronic rhinosinusitis (CRS), asthma and chronic obstructive pulmonary disease (COPD), access to reliable and comprehensive health information is often limited. Recognizing this urgent need, EUFOREA has launched a new Patient Portal—a digital platform designed to bridge the knowledge gap, empower patients and enhance disease management.

To learn more about this initiative, we spoke with Dr Xander Bertels, EUFOREA’s Patient Advisory Board & Advocacy Manager. In this Q&A, Dr Bertels discusses the challenges of patient education, how the portal uniquely addresses CRS and the long-term impact it aims to have on both patients and healthcare professionals.

 

1: What are the biggest challenges in educating patients about CRDs? 

One of the main challenges is bridging the knowledge gap between healthcare professionals and patients. Respiratory diseases like CRS, asthma, and COPD are complex, and many patients are provided with too little information to fully understand their conditions. Especially when consultation slots are quite short background information about the disease is of secondary importance. Adding to this challenge, misinformation online often leads to confusion and disrupts the relationship between patients and caregivers. And most importantly, few tools empower patients in their own journey.

That’s why there is a huge need and demand for credible, trustworthy information and practical tools.

2: The Patient Portal dedicates an entire module on CRS, right?

Yes, although we are actively working on several common CRDs, the first module is fully focused on CRS. CRS is often neglected and patients typically have a very long journey before they get the right treatment and diagnosis. Partly, that is because there are very few resources and upper airway diseases get too little attention. This is while the condition is difficult to understand and often accompanied by comorbidities (like asthma, allergic rhinitis and chronic cough). Our Patient Advisory Board has been very active in this domain and concluded that a lack of education is a major unmet need that needs to be addressed as soon as possible. Not only for the patients themselves but also for their close family and friends to increase understanding.

3: How is the new Patient Portal unique in comparison to other tools? 

The EUFOREA Patient Portal aims to simplify complex medical concepts and present them in a way that resonates with patients. By offering evidence-based resources brought to the patient by world-leading experts, the portal can make top-notch education more accessible worldwide. Apart from informational content and videos, it also provides patients with tools tips and tricks (e.g., to prepare for first and follow-up consultations). Through our portal, we try to foster more active participation and empowerment.

Although different sites are providing educational content. Most often, they focus on a single disease while we know patients with lower airway disease like asthma often have comorbidities of the upper airways (like CRSwNP). That is of course a critical unmet need. You need to be able to deliver information that is both understandable as well as comprehensive. Oftentimes patients don’t even realise that both diseases might be interconnected.

4: What impact do you hope the portal will have on the patient journey? 

The portal will empower patients to take charge of their health, leading to better disease management and quality of life. Enhancing understanding, adherence, and communication, could indirectly help shorten the journey and improve long-term outcomes for chronic respiratory patients.

5: How will healthcare professionals benefit from this initiative? 

The portal can serve as a valuable tool for clinicians, helping them educate patients more efficiently. Providing accurate, ready-to-use resources, will save time during consultations and ensure patients have a reliable source of information at their disposal and take charge of their health with a clear understanding of their care plan.

6: Is there anything else you’d like to share with the reader?

We believe that this initiative represents a vital step forward in patient-centred care, efficient use of healthcare systems, and a push in the right direction for optimal care in daily practice. Looking back on more than a year of content development, we are very proud to present this initiative and look forward to doing the same for other patients living with other CRDs.

Go to www.euforea.eu/patient-portal/ and be among the first to explore our brand-new Patient Portal!

Disclosures: This article was prepared by EUFOREA and touchRESPIRATORY. No funding of fees are associated with this article.

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