Citizen Endo: A Project Update

For our community

It’s been about one year since we wrote “Patients and Data Science: What is Citizen Endo?”, where our researchers detailed the idea for the Citizen Endo project. We told you that we wanted to use our skills as health data scientists, paired with your experience as people with endometriosis, to better understand the disease. In the past year, we have made enormous progress.

Firstly, we asked you about your experience with endometriosis, as well as what you’d like to see in an endometriosis research and self-management app, both in-person in New York city, and online. We showed you a number of different ideas and prototypes to get your feedback. Then we paired with Applied Informatics to actually build Phendo on iOS.

Here’s an update on Phendo thus far:

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Phendo participants are located in 39 different countries around the world.
  • Approximately 227,000 observations — with more every day!
  • Approximately 200 people have answered the World Endometriosis Research Foundation EPHect survey linked through the Phendo app (you can find this in your profile, under ‘Medical history’)
  • Researchers are still actively asking people to use the app (AKA recruiting participants), you can tell your friends about it, too. Telling people about the app makes a difference to participant numbers:
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This graph shows the number of people participating in Phendo, and maps some events (like press article releases, or social media publishings) over the top of the participation rate.
  • Researchers are encouraging those currently using the app to continue using it on a regular basis (AKA retaining participants).

Our overall research hypothesis is that there are subtypes of endometriosis that are different from the surgical subtypes identified so far. We are splitting up this hypothesis into smaller, manageable research questions.

The first of these was “Can patients provide day-to-day accounts of their experience of the disease?” The answer is a definite YES. Thank you. Actually, what you give us through Phendo is a much better, more granular and specific account of endometriosis than what is currently documented in electronic patient records. For example, not only can we see that you currently take a medication, we can learn details about how taking that medication fits with the rest of your experience of endometriosis.

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The graph above shows the most commonly used medications of those using Phendo. You can track hormones, medications, and supplements through the app by adding them in the profile section, and tracking when you take them in ‘Track this day’ (hormones, supplements), and ‘Track this moment’ (medications).

Next up for the project, we are building an Android version of Phendo to make sure as many women as possible can participate. We’ll also be improving the Insights section of Phendo to help you better explore and self-manage your disease.

Good research takes time — we currently have 4 months of data from Phendo and are actively still recruiting participants. Please keep tracking, and tell your friends about our research and encourage them to use the Phendo app! The more you track your experience of endometriosis through the Phendo app, the more data we have to build phenotypes of the disease.

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

Contact Citizen Endo

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

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