The Value of Tracking Your Own Experience of Disease

To help you track and manage your endometriosis, Citizen Endo has created Phendo, a endometriosis self-tracking app & research study.

For women experiencing pelvic pain, painful and heavy periods, painful sex, painful bowel movements, painful urination, or trouble getting pregnant — all some of the common symptoms of endometriosis — understanding what makes these symptoms better or worse for you is important. To help you track and manage your endometriosis, we have created Phendo, a endometriosis self-tracking app. Phendo is available now for iOS (iPhones, iPod touch), and we are hoping to have an Android version released in 2017. You can sign up for updates on Android here.

Phendo is a mobile app based research study — a tracking and self management tool for women experiencing symptoms of endometriosis.

What is tracking? Tracking your endometriosis means regularly recording your experience of the disease- from signs, symptoms, moods, medications, through to self management techniques, diet, and exercise. Phendo relies primarily on active self-tracking — you answer questions from the app about your endometriosis. Some tracking is passive, for instance, your phone can record the number of steps you take every day if you enable step counting.

How might I use Phendo? The app can be used to track endometriosis at the momentary level (e.g. a moment of pain, nausea, fatigue, or a mood) or the day level (your overall day experience, self management techniques used, if you ate something that worsens your symptoms of endo).

Here’s a video to show you how you can track different moments, and your overall day:

For example, let’s say our imaginary Endo Warrior Ada experiences a moment of pain. It’s very sharp, and kind of pulling on her lower back, on the left. Ada would open Phendo, tap “track this moment” and tap “are you in pain now?” And tap the icons for location of pain (left lower back), the description (sharp, pulling), and severity (moderate). Say Ada takes 2 ibuprofen for the pain. She could record this also. In “Track this Day”, Ada can see any moments from her day, and add details about her day — such as her overall day, foods that helped or hurt her symptoms, sex, hormones and and supplements, too.

What are the benefits of tracking your endometriosis?

Each time you track something about your disease, you are providing yourself and us, as researchers, a vital piece of the puzzle that is the enigmatic disease endometriosis.

Tracking your endometriosis may help you understand patterns and trends in your symptoms and experience of disease. It may also help you communicate with your care providers by serving as a record of your daily experience.

Phendo helps researchers by expanding the understanding of the daily experience of women with endometriosis to bridge the gap between clinical understanding of the disease and the way women experience the disease in their daily life.

With Phendo, each time you track something about your experience of endometriosis, it will be sent to researchers!

What are some of the challenges and gaps in tracking endometriosis? Currently, disease experts encourage tracking endometriosis — offering manual tracking tools to patients. However, tracking through pen and paper often means this experience of disease isn’t communicated from patients through to researchers and providers. This can prevent care from focusing on women’s specific needs in managing endometriosis.

Period and cycle tracking apps have been instrumental in normalizing tracking menstruation. However, our research has shown that women with endometriosis require more specific tracking options than those currently available in standard period trackers. For instance, many of the existing tracking apps allow women to select “cramps” or “bloating” as symptoms associated with each period. Such vague terms fail to capture the complexity and variety of endometriosis related symptoms. Each woman’s experience of endometriosis is unique — Phendo is designed to reflect this. This allows you to paint a clearer picture of life with endometriosis for both yourself and your healthcare providers. At the same time, the information you track is analyzed by our research team to help the medical community gain a better understanding of this often perplexing disease.

We built Phendo by actively engaging the endometriosis community, we want to continue to hear your voice in tailoring the app to your needs.

Under construction — help us build the endometriosis app YOU want. We have decided to launch Phendo while it is still under construction so you can start using the app right away. It is a risky move on our part, but we believe there is value in building this together; unlike in many mobile apps, your voice plays a huge role in our design process. Sometimes, we can very quickly include improvements based on what you tell us. Our team wants to hear your thoughts, so we can continue to improve the app and make it the best fit for women with endometriosis. If you think something is missing, email us. If you think something could be improved, email us. If you have a great idea about something you need to have in the app for it to work for you, email us.

Phendo follows research standards for protection of participants. Our research is reviewed and approved by the Columbia University Institutional Review Board (IRB).

About Citizen Endo

Phendo is a part of the Citizen Endo project, a Columbia University research project led by the Department of Biomedical Informatics in partnership with patients to better understand endometriosis.

Contact Citizen Endo

You can visit our website citizenendo.org, send us an email at citizenendo@columbia.edu, follow @citizen_endo on twitter, or like our Facebook page.

Patients and data science for an endometriosis cure: We bridge the gap between patient experience and clinical characterization of endometriosis.

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