{"id":13576,"date":"2025-11-18T09:13:45","date_gmt":"2025-11-18T08:13:45","guid":{"rendered":"https:\/\/leo-foundation.org\/en\/?p=13576"},"modified":"2025-11-18T09:13:47","modified_gmt":"2025-11-18T08:13:47","slug":"we-need-to-consider-the-overall-quality-of-the-patient-experience","status":"publish","type":"post","link":"https:\/\/leo-foundation.org\/en\/2025\/11\/18\/we-need-to-consider-the-overall-quality-of-the-patient-experience\/","title":{"rendered":"\u201cWe need to consider the overall quality of the patient experience\u201d"},"content":{"rendered":"\n
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18 November 2025<\/em><\/p>\n\n\n\n

Physician Sigr\u00fan Alba J\u00f3hannesd\u00f3ttir Schmidt is equally interested in what happens before and after a skin disease is diagnosed. During her LEO Foundation Dr Abildgaard Fellowship she will trace patients with the diseases, bullous pemphigoid and lichen planus, across the Danish population.<\/h3>\n\n\n\n
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The stories the skin can tell have fascinated Sigr\u00fan Alba J\u00f3hannesd\u00f3ttir Schmidt, since she started studying dermatology.<\/p>\n\n\n\n

\u201cSkin is such a visible organ. From the moment a patient walks into the room, you can often tell a lot about what they are suffering from. The skin can also reveal signs of underlying conditions. The saying that it is \u2018the mirror of the body\u2019 really holds true,\u201d she says.<\/p>\n\n\n\n

As a LEO Foundation Dr Abildgaard Fellow she builds upon an interest in patterns at individual patient level and expands it to population-wide statistics. Specifically, she aims to track patterns of the two chronic immune diseases, bullous pemphigoid and lichen planus, across Denmark.<\/p>\n\n\n\n

\u201cI want to understand what characterizes patients before and after they are diagnosed. It is essentially about mapping their journey through the healthcare system. Once we have that reality grounded in statistics, we can begin to explore how to improve the journey. We need to consider the overall quality of the patient experience,\u201d Schmidt says.<\/p>\n\n\n\n

A support for health planning<\/strong>
To identify how the patient experience might be improved, more knowledge is needed about the diseases. The project seeks to outline how common they are, what triggers them, and how patients live with the conditions in the long run. Both bullous pemphigoid and lichen planus are chronic immune diseases that cause inflammation of the skin and mucous membranes.<\/p>\n\n\n\n

\u201cThis can be painful, stigmatizing, and have mental and social consequences. Yet we know surprisingly little about why some people develop them and what happens to patients in the long run,\u201d she says.<\/p>\n\n\n\n

Her previous research on bullous pemphigoid suggests that it weakens cardiovascular health. <\/p>\n\n\n\n

\u201cWhether patients have an increased risk of other diseases is one of the things we hope to map.\u201d<\/p>\n\n\n\n

Schmidt notes that there may be varieties linked to where patients live and their socioeconomic background. This information can qualify the treatment planning over time.<\/p>\n\n\n\n

\u201cPatterns in our data may be able to reveal if patients in certain geographic areas experience a delay in getting their diagnosis. Or identify which patients are likely to require specialized treatment at the hospitals. These insights can help inform how healthcare resources are allocated,\u201d she says.<\/p>\n\n\n\n

Finding signals among noise<\/strong>
Part of the challenge of tracking the diseases is that they have not been registered consistently in the health system. This means that patients are invisible in the statistics if they only see their general practitioner or a private dermatologist. They will not show up in the data, unless they are referred to a hospital for examination. <\/p>\n\n\n\n

\u201cWhen there are no shared diagnostic codes for the diseases, you need to do some detective work and find your own disease markers,\u201d Schmidt says.<\/p>\n\n\n\n

She will identify these possible markers by analyzing several national registers, including data on tissue samples, hospital diagnoses, prescription medicine and the lifespan of residents. Her PhD was a pilot for the approach, using register data to track the occurrence and risk factors of herpes zoster.<\/p>\n\n\n\n

\u201cOut of many different data points, you build your own formula to detect the disease. To me it is like finding meaningful signals and filtering out the noise.\u201d<\/p>\n\n\n\n

Knowing the patterns for patients before and after diagnosis does not only benefit high-level health planning. While it can make it easier to set treatment priorities at a population level, understanding the chronology of a disease can also help clinicians give clearer answers to the patients sitting in front of them. When Schmidt meets people with bullous pemphigoid or lichen planus she hopes to do that.<\/p>\n\n\n\n

\u201cI want to offer some clarification when they ask why they developed the disease and what might happen years from now.\u201d <\/p>\n\n\n\n

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Sigr\u00fan Alba J\u00f3hannesd\u00f3ttir Schmidt, MD, PhD<\/strong><\/strong><\/strong><\/h4>\n\n\n\n
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Researcher and Resident Physician, Department of Dermatology, Aarhus University and Aarhus University Hospital<\/p>\n\n\n\n

Project title: <\/strong>\u201cLeveraging Real-World Data for Dermato-Epidemiological Research of Bullous Pemphigoid and Lichen Planus in Denmark\u201d<\/p>\n\n\n\n

What it covers: <\/strong>A nationwide look at two chronic immune skin diseases, bullous pemphigoid and lichen planus, to pinpoint how common they are, what triggers them, how they are managed, and their long-term impact. <\/p>\n\n\n\n

Bullous pemphigoid and lichen planus cause inflammation of the skin and mucous membranes. For bullous pemphigold people are typically 60 years or older, when they are diagnosed. Lichen planus patients tend to be younger. Both are traditionally treated with systemic drugs like methotrexate, which may have adverse effects, such as suppression of the immune system. A more targeted treatment alternative is not yet well-developed.              <\/p>\n\n\n\n

The project aims to support patient care grounded in data, ensuring resources are spent well and made equally accessible to everyone.<\/p>\n\n\n\n

Best advice for a young researcher: <\/strong>\u201cTry research as early as you can in your career. The best way to know if it is for you is to actually do it. And once you are in it, accept that research has ups and downs. Persistence is key.\u201d <\/p>\n\n\n\n

On receiving the LEO Foundation Dr Abildgaard Fellowship: <\/strong>\u201cThe great thing about this fellowship is that it is an opportunity to build my own research group with support over 5 years. It gives me the freedom to establish a strong foundation for my research while continuing my clinical work in dermatology.\u201d<\/p>\n<\/div>\n\n\n\n

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