Prioritizing the patient perspective in the diagnostic journey

Diagnostic testing is crucial for clinicians to make treatment decisions. However, patients often experience a lack of transparency during the diagnostic process, which can increase their anxiety while waiting for test results. There are growing calls for this to change, as information sharing during the diagnostic phase can foster patient trust and lead to long-term improvements in outcomes.¹

At EuroMedLab 2025, Project Manager and Asthma Patient Lorena Krüger shared her experience with a delay in diagnosis, and the unnecessary stress this caused, pointing the way towards potential improvements for a more patient-centric future for healthcare.

Diagnosed with asthma at the age of five, Lorena is no stranger to the ups and downs of living with a long-term condition. In Lorena’s twenties, however, her condition took a dramatic turn: “My asthma got worse and worse. I would go through periods where I felt like I was constantly fighting for breath. It felt like my body kind of turned against me.” At some point, Lorena started to experience a productive cough that made sleeping a real struggle, and prompted further investigation.

Lorena’s clinician suspected that the coughing might have something to do with chronically inflamed sinuses, and surgery might be required. During a pre-operative lung CT scan, it was discovered that something was wrong. Lorena recalls: “The radiologist called me into the office, looked me straight in the eyes and said: ‘The images don’t look good. You have a mass right there in one of your airways, and I cannot really tell what it is’.”

Although it was soon confirmed that the mass was not a tumor, Lorena waited anxiously for several weeks without full clarity about what it could be. Anxiety between testing and results is common, and patients often suffer from ‘scanxiety’.² Lorena described her experience: “It felt like the world just stopped turning and these entire weeks were a blur of anxiety and fear. Not having immediate access to answers or my regular doctor really amplified that fear even more.”

Lorena is not alone in wishing for answers. A study conducted on NHS patients in the UK found that almost nine in ten patients want to know a realistic timeline for their test results, and more than two-thirds want clinical support during this wait. When results are available, the vast majority of patients also want a better explanation of what the results mean.³

Fortunately for Lorena, a follow-up appointment was scheduled quickly, where the problem was identified as a treatable and removable fungal mass, and a clear treatment plan was put in place. The overall experience could have been very different had there been different measures in place. Lorena explains: “Looking back, faster communication of results would have really made a difference. Maybe a preliminary explanation of what it could be or at least what it’s definitely not, even without a final diagnosis. Of course, this would have to be with a disclaimer, but that would have relieved the anxiety and the shock that I felt over the weeks until receiving the final diagnosis.”

In the future, Lorena hopes for “A truly patient-centric process for healthcare that involves the patient as an active participant at every stage,” and believes including labs in this mindset shift could be “a game changer.” She noted that access to results, clear communication, and lab consultations could make all the difference for patients like herself:

• Accessible results: Lorena would like to see more easily accessible results provided not just to doctors, but also to patients. “Looking back to my lung mass, even a brief and plain language explanation from the lab about what the initial values might suggest would really have lessened the anxiety for me personally, ” Lorena says. Her experience highlights that access to full test history results is important, since this is not always given to patients.
• Clear patient communications and ‘approved’ information: Lorena suggests clear and patient-friendly communication to explain what results might mean would be beneficial, as well as trustworthy educational information: “For patients, it's really difficult to see what is reliable and what might be advertising in some way or another. Then we also have a lot of patients who look for their diagnosis on social media and look for advice on online channels where anyone can say anything.” To combat this problem, Lorena would like to see laboratories provide reliable educational information and resources to empower patients. “It could be as easy as, for example, adding an ‘approved by’ disclaimer at the end of an article or a profile picture on top of the article to say, ‘OK, it’s actually an expert speaking about this’,” Lorena says.
• Consultations: Lorena suggests laboratories can contribute further to clear and timely communication by offering consultations as an opportunity for patients to directly interact with lab professionals: “It could be through webinars, secure messaging, or informational sessions. It will cost some time, I totally understand that, but it could help clarify complex information and explain the significance of different markers and further empower us as patients to have more informed conversations with our doctors.”

The desire for transparency from patients brings challenges for healthcare systems, which are already stretched. Yet for patients like Lorena, there are opportunities to improve processes by sharing more information with patients. Patient insights can be valuable for individual diagnostics, and organizations can benefit from user data to improve the quality and design of services to better meet patient needs.⁴ 

This is in contrast to what Lorena has experienced to date: “The system doesn’t always seem to be set up to readily incorporate the knowledge that we as long-term patients gain after many years of living with a chronic disease, and I think that’s a shame,” she continues, “sometimes it still feels like I have to fight to be taken seriously, and have all of my insights taken seriously, which should be highly valuable to the overall diagnostics.” 

Most of all, Lorena wants healthcare professionals to understand why working together with patients is important beyond the purely scientific results. She says, “By prioritizing clear communication, accessibility of information, and recognizing the patient as a partner, you really, really make a difference. You can also significantly reduce the anxiety that is out there in a very critical stage of diagnosis, and ultimately contribute to a more patient-centric healthcare system.” 

To hear more from Lorena and her vision for a more patient-centric healthcare and diagnostics pathway, click here to register to gain access to the full presentation from EuroMedLab 2025 once available.