Folia is in D.C. to represent you: What matters to patients, matters to research.
If a tool meant to measure the effectiveness of a therapy for patients isn’t centered around patient input, how will we know how effective that therapy truly is? Sure, it may reduce certain lab values, but does that mean it’s also reducing the real life burdens patients care about? If you’re the one experiencing a flare event, and you’re the one the therapy is meant to help, why aren’t you given full reign of how you describe and report your flare?
We believe you should have that power - plain and simple. That’s what we’re doing at Folia. Folia is a digital health technology (DHT) that serves as a direct path for you to show researchers what your flares and condition burden look like and how they both change over time. With Folia, you’re in control of the observations you want to track, and this, alongside others doing the same, helps us paint an evolving picture of what your condition burden looks like. When a patient-reported outcomes (PROs) survey is confined to set questions, the results will be just as confined. The way people experience a condition or a flare-up is fluid, so how people report what they’re feeling should not be set in stone.
We’ve seen firsthand that labs don’t always accurately reflect how a patient feels. And isn’t that what it’s really about? If your labs show your therapy is working, yet you still have flare-ups, is it actually working?
The more knowledge we build together that reflects the real world experience of a condition in real time, the more new therapies can give patients the type of relief that actually matters to them.
Join us on Folia - by simply tracking how you feel, you’re helping us understand what really matters to you, and that’s what matters for research. Even if we don’t have an active research program in your condition, join us! We have a Data Dividends program open to everyone, regardless of your condition. Your knowledge is a piece of the puzzle researchers!
This is exactly what we’re talking about at this year’s Drug Information Association’s Global Annual Meeting - if you want to get a little more scientific, read the full abstract on our panel below:
The Issue:
How can we strike a balance between patient-centric endpoint development and clinical relevance in drug development with the emergence and adoption of a diverse pool of digital health technologies (DHTs)? In this panel, industry executives and clinical research experts will discuss potential to define and develop better endpoints of disease with flares, on the basis of what is experienced and reported by patients themselves. This panel will debate best practices to minimize participant burden while still capturing the full range of endpoint concepts via patient-centric instrument development, best technological approaches, and, importantly, the emerging trend of creating endpoints on the basis of how patients most accurately experience their condition.
Folia Health’s Overview:
Patient-reported outcomes (PROs) are leveraged in clinical trials to measure and determine whether a treatment being tested is effective on the basis of patients’ experience. However, current criteria for selecting PROs may not incorporate the presence of fluctuating disease experiences that matter most to patients in their daily lives. As a result, patients with chronic conditions where disease activity can fluctuate, such as sickle cell disease or atopic dermatitis, may find that current patient outcome assessments do not overlap with their most significant flare experiences. Patient-defined flare endpoint development, captured via real-world evidence in DHTs, may be a solution. Development of such endpoints includes; direct involvement from patients, creation of a valid and reliable assessment tool, and the use of this assessment to create an endpoint that is meaningful to patients.
DHTs can significantly enhance the long-term development of patient-centered flare endpoints by providing more accurate, timely, and comprehensive data on patient experiences. Utilizing the general process outlined above, DHTs provide a pathway to enhance patient engagement, continuous monitoring, and capture patient perspectives in a flexible manner. By leveraging DHTs, researchers can develop more accurate, patient-relevant flare endpoints that reflect the real-world experiences of patients with the goal of having better clinical outcomes and improved quality of life for patients.