Starting with the Patient, Lessons from Eczema

monARCbio
monARCbio
Apr 11 · 3 min read

This year’s Revolutionizing Atopic Dermatitis conference just concluded in Chicago. We came away with valuable lessons on the importance of starting any health technology solution, as well as the journey to better therapies, with the patient’s everyday experience today. I don’t just mean their experience with the condition, but also their experience with how medicine is organized and practiced today.

If you are not familiar with it, atopic dermatitis (eczema) is a condition associated with chronic red and itchy skin that flares periodically. Pain and itching can make it hard to sleep. It can be associated with asthma or hay fever as well. There is no cure, but therapies and self-care measures can offer relief and stave off new outbreaks.

A powerful element of this year’s conference was the opportunity to listen to patients. We heard about the frustration of not being believed if you are not presenting with a flare. We learned about having to answer endless questions about “what have you tried,” and how that wears thin. Being a patient can be a lonely experience, we were told. It’s just you, the patient, and different doctors who don’t seem to talk to each other or share information. Each only seems to see you through the lens of their specialty, without seeing the full you.

These are real problems, and they’re not just about having eczema. They’re about what you have to put up with if you’re a patient, and the limits that constrain doctors from being able to help.

It’s complex. Distinguishing between allergic contact atopic dermatitis and atopic dermatitis (eczema) is difficult and care coordination is critically important. Some biologics for atopic dermatitis can also improve asthma symptoms. These may allow for reducing corticosteroid use for asthma. But that requires information flowing effectively between a dermatologist and pulmonologist.

Alternatively, some biologics for atopic dermatitis may cause increased risk of conjunctivitis. Here again, information flowing effectively between a dermatologist and ophthalmologist is important.

This is something we at monARC Bionetworks have been listening to very carefully. We were inspired to develop the monARC app and the Smart Health Record (SHR) to help. These are designed to allow patients to consolidate records and permit different doctors to see the whole patient together through common, patient-curated data. The monARC app can also help to track environmental conditions and exacerbators that can facilitate untangling a diagnosis.

But beyond making the day-to-day experience and coordination easier, staying on top of data between doctor visits can open doors to better therapies for everyone.

Real-world data (RWD), the data and experiences that occur outside of traditional clinical trials, provide additional insights. These insights can in turn lead to improving the development of new therapies, expanding labeling of existing products post-market, and adding new population data.

Through a well-designed process, evidence can be found in this data to add adolescent populations to a therapy approved for adults. Or a new indication may be possible, such as adding atopic dermatitis to an asthma therapy. Trial matching, feasibility studies, hypothesis generation, and consent agreements (ECAs) can become easier for patients, providers and researchers.

But all of it has to start with today’s patient experience. It should start with things that might seem mundane for researchers, aren’t really a part of the condition, but can be a daily burden for patients. If we start there and help the individual, the individual can help us find better solutions for all of us.

We are excited to be redoubling our efforts for atopic dermatitis and look forward to the second RAD conference next year.

monARCbio

Written by

monARCbio

Accelerating Research Through Collaboration - We are transforming health data into evidence to accelerate research and improve care.