Vulvodynia Research Project

Sensemaking in an Online Health Community for Vulvodynia

Vulvodynia is a chronic condition, research studies find that as many as 16% of women in the U.S. suffer from vulvodynia at some point in their lives (Harlow 2003, Pukall 2016). This research study was presented in CHI 2019 and published in ACM Library. The purpose of this research was to understand how the patient builds the understanding of the symptoms of the undiagnosed/under-recognised disease like Vulvodynia using online resources? And what strategies do they develop to demote/lower the pain?

(August 2017- May 2019)

My Role

Examine the patient experience of women with Vulvodynia and similar chronic conditions, helped to identify and summarize relevant literature, transcribe, code and summarize interview data.

Guide

Prof. Alyson Young, Assistant Professor, Indiana University Purdue University

Problem Space

Patient experience - Understand the painful and expensive experience of people suffering from an under-recognized or undiagnosed disease.

What is the cause of Vulvodynia?

What are the symptoms of Vulvodynia?

Given it is rarely diagnosed, what are the steps in the diagnosis process?

What are the strategies of women suffering from Vulvodynia?

Problem Statment

Research Questions

Approach

1) Literature Review

Reviewed 100+ research articles and two books to understand the problem space and existing literature. Out of which 37 articles and one book were really helpful.

2) Market Research

Understand the market, what are the tools and resources out there. We identified 2 categories of tools - informative and functional.

3) Interview - 15 participants

We interviewed 15 participants, with age group of 23-65 years and located in Australia, Canada, Columbia, and the United States.

4) Collective sensemaking technique - Observing online support groups

Observed an online closed group (with the permission) of people facing or going through this chronic condition for 3 months.

5) Summarize the Information

a) Summarizing research papers

b) Digitalizing the notes

c) Thematic Coding

e) Visualizing the data

Research Insights

Research Insights / Recommendations

Impact

Research

&

Empathize

Stakeholder

Interview

Lo-Fi

Prototyping

Expensive Healthcare system
Key origin of the disease/chronic condition
Proposed 11 strategies to overcome the pain
Proposed medications and possible effects/side-effects
Proposed a list of tests the patient will have to go through to get it diagnosed (Also, highlights the inefficiency and expensive healthcare system in the United States)

The entire journey during this research was an eye-opening, moment for us and informative to the healthcare professionals. This research was presented at CHI conference, 2019. We faced numerous challenges in implementing UX research methods on this project. But the entire journey was worth as it spread more awareness and information for clinical researchers to proceed. Again thanks to my amazing guide and mentor Prof. Alyson who is so generous to keep this research paper public and open for anyone who is experiencing similar symptoms and looking for authentic information to educate herself.

Some challenges in the journey are:-

Getting the IRB approval
Recruiting the participants
Revise the interview transcribes to make sure no personal data is used
Coding technique summarize huge data
Know your biases - Empathise but not develop deep emotions
Identify personal biases and eliminate them while coding
Recode the data (numerous times) to get everyone on the same page
Summarizing the data in the form of memos
Understanding of different statistical methods and their application
Interrpetatting different Data visualizations

Impact

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