Visualizing posts and conversations around PCOS
By: Shaan Chopra
Tags: Design Thinking, Visualization, Pcos, Online Forum, User Research

Polycystic Ovary Syndrome or PCOS is a condition of hormonal balance in women and people with female reproductive organs that causes irregular menstruation and is often linked to infertility

1 in every 10 women in the US have PCOS

7 in 10 women do not know that they have PCOS!

Signs and symptoms of PCOS vary for different people. Some of the most common ones are:

Irregular periods

Polycystic ovaries

Excess androgen (or male hormone) in the body

Different symptoms and signs of PCOS

Even diagnosing PCOS is not straightforward!

It is very easy for people to miss early indicators or even misattribute some of these symptoms (e.g., hair fall, sudden weight gain) to other health conditions like Thyroid or simply to things like stress or bad lifestyle.

….What’s more?

Stigma!

People with PCOS often end up being stigmatized because of their health. What causes this stigma?

PCOS being linked to infertility

Women feeling “ugly” because of acne , hair fall , facial hair , excessive weight , etc

, , , , etc Accompanying mental and emotional health issues

So people often turn to (anonymous or pseudonymous) online platforms to open up about these stigmatized topics. Such platforms provide a dedicated space to connect with people experiencing similar conditions, seek and provide support to one another.

Our paper on “Living with Uncertainty and Stigma: Self-Experimentation and Support-Seeking around Polycystic Ovary Syndrome” discusses how people with PCOS use a pseudonymous platform (unnamed for ethical reasons) to converse about sensitive details of their condition which they might not be comfortable sharing verbally. The community acts both as a social support platform and an information source. Both diagnosed and undiagnosed people use it for multiple reasons:

Seek conversational support

Share personal experiences

Ask for advice

Check the normalcy of their experiences

Learn about other’s experiences

Increase their aggregated knowledge of PCOS, etc

In this project, I take a closer look at the data we qualitatively analyzed. I created visualizations to understand the engagement on different posts and conversations around PCOS. Here are some of my guiding questions.

RQ1: What kind of posts are more popular? How does post engagement vary depending:

Who wrote it — Nature of user

What it talks about — Topics

How the user talks about — Type of post

What is the overall emotion of it — Sentiment

RQ2: How do the nature of users, topics, type of posts, and sentiment correlate with each other? RQ3: Who are some of the most active users? What kind of posts do they make?

PRODUCT DESIGN

I explored the dataset and started by creating some basic pie-chart visualizations for the different coding schemes. Wanting to know more about the textual content of the posts, I created word cloud visualizations for each of the post categories. Next, I went on to make more complex visualizations to understand (a) the popularity of different posts, (b) the user interaction dynamics, and (c) the relationship between different post coding schemes.

Here are some of my initial product design ideas!

I iterated and reflected on each of the visualizations; discarding and refining them based on what I wanted to learn from the data. For example, here is an iteration of a scatter plot: