Recently, Adrienne Pichon, a member of our lab published a research paper titled “Divided We Stand: The Collaborative Work of Patients and Providers in an Enigmatic Chronic Disease”. On October 19th, Adrienne presented the paper at the 23rd ACM Conference on Computer-Supported Cooperative Work and Social Computing! The paper discusses the complexities of the patient-provider relationship, which is further complicated for enigmatic conditions (ie, endometriosis). This research will help guide development of tools for patients and their care team to understand, communicate about, and manage their illness.
We wanted to understand how women living with endometriosis care for their condition…
A member of our lab, Kathy Li, has published a paper in Nature’s partner journal Digital Medicine! The paper is titled “Characterizing physiological and symptomatic variation in menstrual cycles using self-tracked mobile-health data.” Below is a summary of the paper, but you can also read it here.
The menstrual cycle is an important indicator of overall health and wellness in women, but investigation into characterizing menstrual cycles has been limited by the lack of large-scale, reliable datasets. However, with the rise of menstrual tracking mobile apps, content-rich data of menstrual health experiences and behaviors are now accessible.
We explored a…
Happy holidays fellow Citizen Scientists! I’m Ipek Ensari, an Associate Research Scientist working with Dr. Elhadad and the rest of our team at Citizen Endo. This year has been strange and challenging for many, but we have some exciting news to share with you to end 2020 on a high note. Consider this a “save-the-date”!
Back in October, I was selected to participate at the Symbiosis Film Competition held during the 13th Annual Imagine Science Film Festival. Symbiosis selects 6 scientists and 6 filmmakers and pairs them to make a science-inspired short film in 8 days from start to finish…
Dr. Laura Symul is a postdoctoral fellow at Stanford University. She obtained her PhD in computational biology at EPFL in Switzerland. Her interests include menstruation, fertility awareness, and data science. Period and fertility tracking apps have emerged as a monitoring tool for users, but are also shaping the current research on mensuration and women’s health. We talked with Dr. Symul to discuss her menstrual health research, using self-tracked data, and how the field on menstruation is evolving.
What is your academic background?
My background is in engineering. Quite early, I got interested in how computational methods could be applied to…
Patient advocacy and health literacy: Interview with Abby Norman, Author of “Ask Me About My Uterus”
Implicit bias has stained healthcare, creating an all too common experience for people with endometriosis of dismissive physicians, downplayed health concerns, and delayed diagnoses. Particularly, there exists gender norms in pain literature, distinguishing men and women’s perceptions and managing of pain. In fact, studies have shown that women receive less pain medication, more antidepressants, and more mental health referrals- illustrating these biases. Abby Norman recounts her path to a diagnosis and necessary patient self-advocacy in Ask Me About My Uterus. Abby combines her personal account with interviews and past and present medical research. …
Bad Medicine & Lazy Research Leave Women Dismissed and Sick: Interview with Maya Dusenbery, Author of “Doing Harm”
“It’s all in your head” — it’s a phrase that many women with endometriosis are either told explicitly or implicitly. Receiving recognition of endometriosis symptoms from doctors is a frustratingly similar experience among endometriosis patients, and on average it takes 8 years to receive a diagnosis. It’s known in the literature that endometriosis symptoms are normalized, stigmatized, and ignored. But why are women dismissed and left ill by the medical establishment? Maya Dusenbery explores this question in her book Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick, published earlier this year…
For our latest Phendo tracking challenge (from March 20-March 27, 2018), we invited participants to complete the World Endometriosis Research Foundation (WERF) Clinical Questionnaire as well as a questionnaire about the type and stage of their endometriosis. This survey represents the gold standard in clinical questionnaires for endometriosis.
Every woman has their own experience with endometriosis, and their clinical history of the disease. By using the WERF survey we can standardize this information and begin to learn about endometriosis across patient experiences. Moreover we can use this information to evaluate the results of what we learn from Phendo data. Ultimately…
Good news! we have created a more detailed visualization of your data in Phendo! We know a lot of you wanted to be able to share your data with your physician or with others, and ‘Get more Insights’ allows you to do this. It may also be helpful for you to better understand your patterns and possible triggers.
You can visualize your data in the Insights tab and on a desktop. On the Phendo app, you can see the last 30 days on the Insights tab. The last 30 days are represented as a circle. ‘How was your day?’ is…
We recently held our very first Citizen Endo challenge! Citizen Endo challenges are short tracking tasks that help engage Phendo users in contributing to citizen science through Citizen Endo, a critical part of our participatory approach to understanding endometriosis. Challenges are an opportunity to get competitive and participate in the Citizen Endo community, and challenge participants help us collect data critical to understanding endometriosis.
Challenge #1 took place from July 24-July 30, 2017 and participants were tasked with tracking in Phendo every day for a week, answering as many questions that seemed relevant to them.
Take a look below for…
Citizen Endo
Patients and data science for an endometriosis cure: We bridge the gap between patient experience and clinical characterization of endometriosis.
