Endometriosis is a painful condition involving the growth of tissue similar to the endometrium — the inner lining of the uterus — in other places inside the body. People with endometriosis can experience fertility issues, pain during menstrual periods, fatigue, and other symptoms. This disease affects about one in ten women from the ages of 15 to 49 worldwide, but is rarely discussed on the same level as other illnesses. Currently, the National Institutes of Health dedicates about $7 million annually to endometriosis research, but for comparison, breast cancer research receives $755 million annually in funding.
In 2016, Noémie Elhadad and her lab at Columbia University’s Irving Medical Center created the Phendo, or “phenotyping endometriosis,” app, to better understand and identify symptoms of endometriosis. The research team's goal is to fill in gaps of medical knowledge about how individuals experience the disease on a day-to-day basis. The app invites anyone over the age of 13 who has had at least one menstrual period to record their experience with endometriosis by logging daily symptoms and observations, which the Phendo team analyze to draw conclusions about the endometriosis experience.
As someone who is not diagnosed with endometriosis, I have participated in this project as a control, meaning that my participation provided the researchers with a more robust understanding of what the “regular” day-to-day experiences are for people without endometriosis, giving them a solid baseline for comparison to other participants. For me, taking a few minutes at the end of each day to log my pain levels, mood, diet, exercise, and medicine intake quickly became a habit. I’ve become reflective about how I experience my body and how that experience is dynamic.
On any given day, my mood might be good or bad, and my pain levels might be high or low. This app allows me to find patterns in my weeks and months, which helps me understand my body so that I can anticipate how I might feel at any given time.
The Future of Science and Medicine
Elhadad and her lab are working on something incredible, not just for themselves, but for the future of science and medicine. As Elhadad explains, “Citizen science is making its way into biomedical research.” Citizen science is the engagement of regular people in scientific research and discovery.
Traditional endometriosis studies are more invasive than Phendo is for participants. They could involve regular physical examinations, extensive questionnaires, urine collections, blood sampling, pelvic examinations, and even surgery. While this provides rich data, using apps like Phendo allows for higher participation rates and more unique patterns of engagement for each participant, which could reveal more about what happens “in between” doctor’s appointments.
To develop the Phendo app, Elhadad conducted more “traditional” research studies that surveyed patients to better understand their opinions about the questions the app asks about their symptoms. This shaped how questions were phrased to make them as straightforward as possible, helping users feel comfortable on the app.
The app poses questions like “What activities were hard to do today?” and “How is your mood?” Elhadad believes that using research studies to inform the design of this particular citizen science project has helped to optimize participation, leading to over 10,000 participants making regular contributions to this project.
Next steps for the Elhadad lab include drawing conclusions from participant data, publishing what they’ve discovered from Phendo, and providing their data to the research community. This data will be de-identified to protect the privacy of participants, meaning that any personal information that could be used to trace participant answers on the app back to them is separated from what other researchers can see.
When papers are published, the research team will email participants about their findings in accessible language. The lab also allows anyone to read their journal articles without a paywall and plans to add a component to the app that helps participants summarize their own personal data and present it to physicians, thus creating a tool for regular people to advocate for their health.
Open Access to Information
This emphasis on access to information is part of the project’s core values. With its transparency, the Phendo team hopes to more garner public interest in the disease and improve access to government funds for endometriosis research in general.
Creating an app that people feel comfortable using can help to increase participation, giving Elhadad more to work with to help the scientific community understand and find cures and improved treatment for the condition. This app considers the wants and needs of participants and their doctors. The Phendo team aims to create data that individuals and researchers can use in the future, for both personal health needs and wider societal understanding.
Citizen science is an important tool for compiling information. When the public is a valued partner on medical research projects, we all can begin to better understand our own bodies, better communicate with professionals, and even shape what professional researchers are looking for in their medical studies.
Phendo has set the standard for collaborative biomedical research, and I am excited to see more apps like it in the future. We have the power to help thousands of other people who may be suffering from conditions like endometriosis. Change is only a few clicks away.
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