Case Study: Here’s why having PCOS should be normalized

👋Let's give you some background context

• The objective of the research is to understand how PCOS members spend time in these communities and develop an understanding of their mental models.
• The goal is to prepare a research report on an internet community & identify the possible solutions that can be designed for the community members. This research is made as a part of 10K Designer’s Masterclass.

Quick Details about the Community

🚩Goals of online PCOS community

• Helping each other provide hacks to implement lifestyle changes which they can implement from the comfort of their home.
• To create an environment of inclusion so as to steer clear of isolation and confusion felt by the women suffering from PCOS.
• To provide a platform for women with PCOS to discuss their journey and day-to-day struggles straightforwardly.
• To bring together all the women with PCOS and share knowledge about their lifestyle disorder that every 1 in 5 women is suffering from.

🧠 Brief information about PCOS

Polycystic ovary (ovarian) syndrome (PCOS) is the most common hormonal disorder in women of reproductive age.

• This lifelong health condition continues far beyond the child-bearing years.
• It is a condition in which the ovaries produce an abnormal amount of androgens, male sex hormones that are usually present in women in small amounts.
• The root cause of PCOS is still unknown, but a number of theories link the condition to insulin resistance and higher levels of certain hormones, including testosterone or might be hereditary
• Symptoms include irregular menstruation cycles, acne, hair fall, weight gain, depression, etc.

💥 Steps followed for the Research process

🧠 Inspirations

We see PCOS is something that many people aren’t aware of although it is something that every 1 woman out of 5 in India is diagnosed with. Women with PCOS face a lot of challenges to figure out if they really have PCOS, finding the right doctor for themselves, etc.

🌐 Explorations

We explored several Online groups through different channels like Discord, Instagram, Reddit, Facebook, etc. We had some initial criteria for what kind of online communities we want to research, which are as follows:

• More community members(more than 500).
• Good engagement in the community ( at least 10 messages per day).
• Preferably Indian community as there won’t be any issues with the time zone, comparatively easy to approach & our insights will be focused on Indian Demographic.

Bird’s eye view of our research strategy

👀 Observations

(Behavior & usage patterns of the community members)

• Members of the community bring forth solutions for other members that are appropriate according to their experiences.
• They trust each other's suggestions because each woman in the community is suffering from PCOS.
• Mostly the doubts revolve around the management of PCOS symptoms with the help of home remedies, workouts, and easy-to-implement hacks.

Community Engagement on helping each other’s problems by sharing some online tips, blogs & product recommendation

• One category of doubts which are commonly asked is brand choices related to health supplements & beauty products.
• A range of 10 –15 women in the community posts doubts & solutions daily.
• The time frame during which the messages are shared is 7 AM to 11 PM.
• An environment of understanding, empathy, and trust is evident through the messages shared in the community.

🔖 Research

👉 Secondary Research

While doing secondary research, we explored blogs, Pinterest and YouTube to understand research that is already done about PCOS.

Find the secondary research raw data here.

💡 Key Insights from Secondary Research

1 There are stigmas associated with PCOS. Lots of women and girls are afraid to open up about their experiences and feelings.

2. PCOS is misunderstood by society. There is a need for active awareness by the relevant experts.

3. Women with PCOS are discontented with the medications provided by the doctor because the medications do not address the root cause of PCOS.

4. They eventually move towards self-treatment which provides them benefits.

5. PCOS affects each woman differently. Hence, each woman has her own unique journey in dealing with PCOS.

For more details on secondary research, check out our Notion File here.

👉 Primary Research

We approached by texting the community group members starting from Survey to Interviews. With this approach, we managed to get 15 Survey responses & 5 Interviews.

Find interviews & survey raw data here.

💡 Key Insights from Primary Research

- First-Time Experience with PCOS:

Initially(First-Time) it is quite difficult to identify the symptoms, participants weren’t able to understand what was going wrong with their body. It took them at least 3 months to figure out & even till 3 years that they were actually suffering from PCOS (from interviews).

- Struggle to find a good doctor(gynecologist, psychologist, fitness experts):

It is a struggle to find well-trained & sensible doctors for them. Doctors are not able to provide them a solution that is effective. 3 out of 5 participants in the interviews addressed that doctors don’t have time & mostly in a hurry they give general suggestions rather than personalized suggestions.

- About Community Tips: Useful or Not?

Community suggestions work mostly for the majority of the members, but sometimes it doesn’t work. These tips are not personalized for each & every type of body. 9 out of 15 participants in surveys addressed it.

- Participants feel that this online community is providing good value to them which includes:

1. Educating themselves in PCOS through peer discussions

2. Getting & sharing natural treatment tips & supplements to control the symptoms

3. Gives a sense of support & sensibility among each other

All survey & interview participants feel that this community is providing them good value in terms of emotional support & controlling symptoms.

- Balancing between daily responsibilities & Symptoms: Difficult or Easy?

1. They go through a lot of pain & challenges during their menstruation cycle. It's difficult for them to balance the daily responsibilities with the symptoms, especially during their menstruation cycle.

2. From our interviews, 3 out of 5 participants feel that it's difficult to manage their symptoms with daily responsibilities, especially for working professionals & housewives.

💡Possible solution

Create a website or application for booking appointments with professionals (doctors, fitness experts, psychologists, gynecologists) experienced in dealing with PCOS symptoms.

• The mode of consultation can be online or offline depending upon their location and comfort.
• Educational blogs on PCOS written by professionals to create awareness among girls as well as women to become aware of the imbalances which can occur.
• Product (eg. supplements) recommendations by professionals.
• A platform to discuss PCOS-related queries on the group & make good connections with others.

🧐 Behind the Scenes

Screenshots of chats: How we approached the participants

💥Our Learnings

• Time is valuable. So make sure to utilize the participant’s time by asking only relevant questions.
• Always question “WHY”? Why this way to solve a problem, how about trying another way. It allows thinking at a macro-level & not to get attached to our first approach.
• Always take feedbacks, & iterate. This helps to think from the reader’s perspective as well. We aren’t only doing a project for ourselves but also for our readers. Make sure you provide the best possible value to the readers.

Overall, it was a great team project with Pooja Agarwal. Special Thanks to 10K Designer’s team for giving us this opportunity & mentoring us for making improvements.

That’s a Wrap 🎆

Thanks for Reading 🙏