Using Phendo: Frequently Asked Questions
A guide to Phendo, a mobile app for research and tracking endometriosis
Here at Citizen Endo, we often get questions about our endometriosis research, and in particular, our research and self tracking app, Phendo. Below, we answer some of your most common questions.
Can I use Phendo if ….?
- I take contraception or hormones? Yes, and you can track these in the app!
- I haven’t yet started menstruating? No. You need to have reached onset of menstruation to participate in the study and use Phendo.
- I am under 18? Yes if you are 13 or older. You will need an adult to read the consent information with you and co-sign the consent in the app.
- I have had a hysterectomy? Yes. Some women still experience symptoms of endometriosis after hysterectomy, making tracking after hysterectomy an important part of our work.
- I do not currently get a period, but have had at least one before? Yes.
- I don’t have endometriosis? Yes. You can participate in Phendo as a control. By recording your daily life experience, you will help us research this important women’s health problem.
- I have had surgery to remove my endometriosis? Yes
- I think I might have endometriosis but I’m not sure? Yes. You can tell researchers about your medical and surgical history in the Profile section of the app.
- I am pregnant? Yes. Be sure to complete your medical history in the Profile tab.
- I am peri-menopausal or menopausal? Yes, just complete your medical history in the profile tab.
I’m in pain. How do I track this in Phendo?
To track your pain, tap the ‘Track’ circle icon located in the navigation bar at the base of your screen. When inside this tab, you should see two options ‘Track this day’ and ‘Track this moment’. When you experience a moment of pain, log it through the ‘Track this moment section’. A moment of pain includes the location (e.g., pelvis) type of pain (e.g., dull, shooting), and severity. Anything you log in here throughout the day will be visible in ‘Track this day,’, so you can review the different moments you felt during the day.
I forgot to track something. How do I go back and add it?
If you forget to track either a moment or a day, you can go back and add them later. To add a previous moment, open ‘Track this moment’, and adjust the date and time rolodex at the top of the screen to reflect the date and time you experienced the moment. Your moment will be saved according to the time in the rolodex. There are two ways to track something at the day level. You can either use the ‘Review’ tab to navigate to the day you want to track — tapping on the day will open the ‘Track this day’ section of the app, once here, you can add, or edit you daily experience as you wish. Also, you can go directly to ‘Track this day’ and use the date bar to navigate through the days, adding or editing where you need to.
I’ve started taking a new treatment. How do I add this into Phendo?
There are three types of treatments you can track in Phendo: hormones (birth control pills, IUDs, etc.), medications (non-hormone prescriptions or over the counter meds you take either for endometriosis or any other reason), and supplements (vitamins, herbs, etc.). To enter a new treatment, go to the “Profile” tab. You can always edit or delete any treatment later.
You can track whether you took any supplement and/or hormone once a day under the “track this day tab. For medications, you can track them throughout the day “track this moment” tab. Like for anything you track in Phendo, you can either track as it happens or retroactively by selecting the time and date at which it happened.
How do I let researchers know about my medical history?
It’s really helpful to know what you have experienced in the past when it comes to endometriosis. To tell researchers about your medical history, we have included links to the World Endometriosis Research Foundation’s EPHect survey in the app, which you can find under the profile tab in Phendo. Simply open the Profile tab and tap on ‘Medical history’. Here you will find a personal link to your EPHect medical history survey. It should take about 45 minutes to complete.
What foods should I track?
You can track any foods you want to. Under the profile tab you can add foods that either worsen or improve your daily experience. For those with endometriosis, this means foods that worsen or improve your symptoms or daily experience. They do not necessarily need to impact you in any specific way to qualify for tracking. For example, if caffeine gives you a headache, track it. If drinking kombucha makes your digestive system feel better than usual, track it. Our diets can produce a wide variety of responses, and we want to capture that complexity as best we can. You can also track a food that you are experimenting with and trying to understand whether it worsens (or improves) your daily experience.
Should I log when I eat something that doesn’t affect me?
If it never affects you, you don’t have to record it in the first place. If this is one of your “trigger foods” or one of the foods you are trying to figure out the effect of, then make sure to track each time you eat it. The times when it didn’t feel like it affected you, answer “None” to the “Have any effect?” under the “What did you eat?” tab.
What exercises should I track?
You can track any exercises you want to. Under the profile tab you can add exercises that either worsen or improve your daily experience. For those with endometriosis, this means exercises that worsen or improve your symptoms or daily experience. For instance, if strength training makes you feel better than usual (despite typical levels of soreness), track it. You do not need to add every single exercise you do to the list (e.g. lat pulldown, lunges, etc.) unless a specific one causes you unexpected pain. For example, if sit-ups hurt your lower back, add them to the list of exercises that worsen your symptoms.
How should I track exercises?
You can do this in two ways, and it’s helpful for us if you do both! Under ‘Track this moment’, you can track your experience under ‘Are you in pain now?’. Additionally, under ‘Track this day’, tracking your exercise will give us additional insight into your daily in. Remember you can go to the profile tab and add to your list of exercises that worsen or improve your symptoms.
I’m not sure if I should track something. I’m afraid I’ll skew research data by logging things that aren’t appropriate.
When in doubt, track it. We want to know all about your aches and pains, tummy issues, moods, activities, and more! We also want to know when things are going well. For instance, if everything went great today, and you didn’t have any issues in your activities of daily living, then track your day as “Great”, and select “Nothing to report” under “Which activities were hard to do?”. Giving us a complete picture of your day helps us work toward improving women’s health.
Nothing bad happened today. Should I bother tracking this in Phendo?
Yes! At the very least, answer ‘How was your day?’, or perhaps tell us which activities were hard to do (you can select ‘Nothing to report’ if the day was good). Tracking when things are good helps our researchers make better sense of your experience of endometriosis.
Some questions in Phendo don’t apply to me; How do I hide them?
Maybe you don’t have any period, and you don’t need to see the “Do you have your period” question every day. You can hide any question (day or moment), by going to the Settings icon on the top right hand corner under the tracking screen. When you open this, tap ‘Questions I want to track’. From here you can add or remove questions you want to track for both the day and the moment level tracking.
I want to change the time of day I receive notifications in Phendo:
In the Track this moment tab, go to the settings icon in the top right hand corner and tap. When you open this, tap ‘Notifications’, and by clicking on the question that reads ‘Remind me to track at’, you can change the time you receive notifications from Phendo.
I don’t have symptoms of endometriosis but want to help. How do I use Phendo as a control?
Using Phendo as a control means tracking anything you think is a normal part of your day, not just symptoms that you think reflect those of women with endo. You should try and track at least once a day. Control users are incredibly important, as your data helps our researchers distinguish which symptoms are due to endometriosis and which are typical experiences of women in general. We use data from control participants to establish a baseline of “normal.” If you’re still unsure about tracking things as a control, feel free to email us! [link to firstname.lastname@example.org]
How do I get in touch with the research team?
You can email Dr. Noémie Elhadad, PhD Student Mollie McKillop, and research manager Sylvia English at email@example.com. We try to get back to you within a day.
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 firstname.lastname@example.org, follow @citizen_endo on twitter, or like our Facebook page. We are also on Instagram @citizenendo_team