Building Psoriasis Patient Journey
To identify design opportunity
In my Masters’s thesis, I conduct generative research to build a deeper understanding of patients' battle with psoriasis throughout their life. From this, I identify targeted interventions to improve the patient’s quality of life.
Motivation
For nearly 2 years, I had supported and observed a near and dear friend battle psoriasis. As time passed by, her battle to manage psoriasis evolved from unknown triggers causing flare outs to gradually learning by connecting the dots in this chaos.
This constant battle with the unknowns to find your perfect concoction of psoriasis management is what motivated me to take this up as my project towards my Master's thesis.
Challenge
Although Psoriasis is a common condition, its elusive and incurable nature sets its patients on a life-long self-management path unique to each.
Due to the absence of knowledge on path psoriasis patients embark on especially in modern times when everybody turns to online resources and communities, I set out to answer the following
Key Research Questions.
What are the notable behaviors, needs, barriers, motivations, and why behind each step during their journey?
Identify a high-level patient journey pattern for psoriasis patients
What is the role and impact of technology resources and products on patients?
Identify intervention points and product opportunities to improve patient's quality of life
My Role
As a UX Researcher, I conducted all activities in this research under the guidance of my advisor Alyson Young and my advising committee.
Process
Research
Secondary Research
Primary Research Design
Creating a research plan
Observe
Observe online reddit forum r/Psoriasis
Extract reddit posts from Jan 1 - Mar 31 2019
Semi-structered Interviews
Conduct interviews with patients recruited from the forum
7 interviews were conducted
Qualitative Analysis
Qualitative iterative Coding of the posts obtained from observations
Affinity Diagramming identified themes
Patient Journey Mapping
Combine each patient's journey and identified findings from observations into a single integrated patient journey
Making Design and intervention suggestions
Secondary Research
I conducted a literature review from trusted academic journals and online resources regarding psoriasis and its treatments, online health information seeking trends, and different types of online resources available for patients.
Why Conduct Secondary Research?
Familiarize myself with Psoriasis and its patients, their lifestyle, dispel myths and their needs
Learn the terminology (medication names, treatment names, etc) patients might use
Identify existing gaps and deficiencies that need to be bridged in current research
Improve understanding of the problem
Define in detail my primary research space
Created an annotated bibliography to be better informed of research conducted uptil now and evaluate gaps and needs for future research.
Synthesized my research into a board for reference when planning and conducting my primary research.
Key Findings
- Outdated Psoriasis Patient Pathway from research done only in an offline environment and only patients with topical medications from the late 2000s
- Need for a new holistic pathway is cited by the medical community for better provision of care and development of medical interventions at apt phases of patient's journey
Creating a User Research Plan
- Picked a research site
- Evaluated possible methodologies to use, their pros and cons by creating a method decision matrix
- Established participant criteria and recruitment methods
- Created screener surveys, participant invitation emails
- Wrote protocols for observation and one on one generative semi-structured interviews
Research Site
The subreddit thread of r/Psoriasis was selected as the online platform to study psoriasis patients.
Why this forum?
It's an open forum for all psoriasis patients to interact, giving the flexibility to observe members without interference.
Limits the risk of a close-knit community with a certain track of beliefs.
Public access allows even non-Reddit members to be recruited as participants.
Passive Observations of Reddit forum r/Psoriasis
2 times a week from 1st Jan - 31st March
Data gathered:
Observation Notes
Exported all individual posts in text PDF
Why Observe?
Unobtrusive knowledge collection
Get first-hand experience and knowledge about psoriasis patients before interviewing them
Notice unusual behaviour that may be normal for psoriasis patients
Identify topics and themes of interest for them
Explore topics that may be uncomfortable for them to discuss in interviews
Synthesizing
While collecting everyday observations I started Affinity Diagramming beside my desk and grouping observations into larger themes. This helped me identify trends and concerns of patients early on for interviews.
From these I started creating a codebook .
Distilled this large amount of information into identifiable topics and trends using the codebook
A word cloud of most common topics discussed by Psoriasis forum members
Key Insights
- Patients' temporal patterns: Patient's concerns follow a pattern dependent on what step of psoriasis treatment they are on.
- Trial and Error aided by advice from other patients to find an effective treatment
Discussed topics amongst patients in the Reddit group
Semi-Structured Interviews
Conducted 7 telephone one on one interviews of patients recruited from the Reddit thread of r/Psoriasis. These interviews were open-ended and semi-structured to obtain maximum contextual input from participants regarding their journey and how they used the online resources.
Interview Structure
- Patient's Story / Journey with psoriasis so far
Learn more about how the patient navigated the medical system to obtain treatment, Different resources consulted for treatment, factors involved in decision making
- How the patient used online resources in tandem with their offline treatment
To learn more about different online resources they used, when they used it, how did these resources affect their decision making or treatment pursued
- How do they use reddit forum
To learn about their feelings towards reddit forum, what kind of posts do they read from other patients, what support does it provide them
- Other technologies they used to assist their treatment plans
To learn about different apps or technologies they used to help aid their treatment plans
Data Analysis
Distilling Information and Modelling Findings
Coding qualitative data & theme identification
To analyze the posts I create a qualitative codebook by the themes observed in the observation stage. This codebook was updated iteratively to add on to the themes and sub-themes identified.
Patient Ecosystem Mapping
To understand the complex network of relationships between patients and their support networks. It helped me see a holistic view of how multiple platforms apart from just doctors come together into play when treating the patient.
Patient Journey Mapping
Each participant's user journey maps were created to better analyze similarities and differences. This also let us gain a circumspective view of the patient's care and tools of the trade in managing their psoriasis.
Why Patient Journey Map?
Reasons why there was a need for a Patient Journey map and to connect their online activities to them:
- To identify gaps in professional healthcare
- To identify the needs and priorities of patients at various stages throughout their journey with psoriasis
- Patients experience differs with respect to the illness, location, accessibility of care
- To understand how decision-making takes place throughout
Major factors affecting the decisions and Journey of patients observed were
- The severity of Psoriasis - Mild - Moderate Vs Severe
- Health Insurance Coverage/Financial factors
- Availability of Dermatologist
- Other Physical conditions eg. Pregnancy, etc
A composite journey map was derived by iteratively analyzing the individual Journey maps and observations
After Collating all the observations and interviews I created the following Experience Journey Map with possible intervention points identified.
Intervention and Design Suggestions from Analysis
Redesign the forum for pinned posts about regularly posted types of posts like progress over weeks, queries of biologics, topical treatments, diet modifications, etc.
Psoriasis Management Assistance
Existing apps do now allow patients to track the patches and the dietary and lifestyle changes. Create or modify existing applications for introducing elimination diet or lifestyle changes notes along with pictures of patches to analyze the progress of patches.
Consulting
I have consulted a startup that is creating an application to improve psoriasis patient's lives. By presenting my research reports I consulted their team in making product roadmap decisions.
What lies ahead?
Currently, I am working on creating the Psoriasis Patient assistance application which will allow patients to better track and manage their condition and triggers.
You can connect with me at nea.patil.02@gmail.com
Updated: 2024
