The Journey of Kidney Patients: User Experience Research

Published on
Sep 24, 2023
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Around 2016-2017, I was approached by a social innovation agency for a project to design an e-learning experience on the topic of NCDs (non-communicable diseases). The agency’s client is a health foundation which had been funded by a Thai government agency for health promotion. 

There were five parties who would work together; this social innovation agency, the foundation, the media production team, the web design/programmer team, and Artipania-our team of two. We discussed the topics and decided to choose 3 learning topics; diabetes, heart disease, and chronic kidney disease (CKD).

Before we started designing anything, I suggested the project needed to conduct “User Experience Research”. Although the grant was to create the final product of “e-learning”, the least we could do was to make this e-learning as relevant to the users as possible. The content and experience of users going through this e-learning had to be user-friendly and beneficial for them. Then the foundation connected us to clubs and groups of people who provide support to sufferers.

Visual tool for user experience research

At this point, I want to share the story of the time when I worked with the kidney disease support group called Puen Roke Tai  (Friends with Kidney Disease). It was called the Kidney Friends Club of Thailand then and now the Kidney Friends Association of Thailand (KFAT). 

The group members consisted mainly of patients and their caregivers. They have strong networks and partnerships all over Thailand, with their local heads in each of four regions. Their mission is to support CKD patients and strengthen the relationship between those and service providers.

I interviewed the regional heads to understand the overall landscape of CKD and the support systems, and found they were struggling with health promotion campaigns.

Later my team conducted a workshop to understand the journey of CKD patients and their caregivers. I carefully selected visuals and images that both metaphorically and literally represented different feelings and situations of their experience as a tool for communication. Then I designed the discussion guide and prompts. 

On the workshop day, after building rapport and an ice-breaking activity, I asked twenty participants to think about the experience they had had with CKD. The experience could be at any stage of their journey, such as in the beginning when they learned they had CKD, in the current situations, or the ups and downs or anything which they felt was relevant. Then they would take a careful look at images we printed out, select ones that resonated with their journey, and create photo collages to tell their stories.

Some photos/images for the workshop

I used photo collage as a user research tool because it gives a sense of invitation for participants to get involved with the discussion, it feels less intimidating, and it can easily and rapidly overcome shyness or uncomfortable feelings when talking about sensitive topics. 

It is also sometimes difficult for people to explain and express these feelings so visuals can assist them to externalize and express their experiences and emotions. These collages can serve as the basis of future study and they are also an effective way to document patients’ points of view.

After that, we conducted a focus group discussion. The participants were asked to narrate their experiences through their collages. I have always found the photo collage followed by focus group discussion creates an open environment for discussion and sharing.

Patients' unmet needs and their point of view

To maintain their health, sufferers need to perform dialysis. There are 2 types of kidney dialysis in Thailand; the in-center Haemodialysis (HD) and the Peritoneal dialysis (PD).

Two types of kidney dialysis

HD was overwhelmingly the most widespread at that time, but it has always needed a great deal of money. This is where patients lost hope. It has long been notorious that people may suffer serious financial hardship, and even have to sell their personal assets to afford the HD dialysis.  

The PD is less well-known but efficient and more affordable. Unfortunately, many patients did not believe in the advantages of PD and had therefore dropped out of the system and from routine check-ups with their local health clinics and centers. They believe adopting PD would lead to premature death due to infection.

The government promotional campaign has still not reached wider audiences. One of KFAT’s efforts is to support patients' networks and educate them about the benefits of PD.  They have also submitted a petition to the Ministry of Health to pass the law increasing the budget and welfare payment for CKD patients. Following this, the MOH’s efforts were gradual distribution of some PD supplies and lower fees for patients who decide to perform PD at home. However, Many of them also are not aware of their right to be treated with PD.

Had they known the truth and adopted PD, it would have increased their survival chances. When they feel they do not have a choice because HD is not affordable, CKD patients and caregivers turn to unsubstantiated alternative medicine. They take home-brewed herbal remedies in the hope these can cure CKD. Not surprisingly, it worsened their condition. 

Patients' unmet needs and their point of view

They feel much better when they know there are others with the same condition.
Some of the CKD patients were losing hope until they joined the KFAT. After learning about their rights, their choices, they feel better and they have hope. After they manage their condition better and learn how to use PD, they dedicate themselves to help other patients. This also gives them a sense of control (self-efficacy).

Design opportunities

With these insights and this journey of discovery, we found an opportunity to convey key learning points in the e-learning content. We wrote scripts and created storyboards; starting with building up hope for the patients, addressing their anxiety and how to cope. We also created "CKD friends, let's talk" which is the module about experience sharing from the patients who can manage their own health, both physically and mentally, really well. We based some part and sequence of design and activities from learning theories and health behavior change theories.

Scripts for  learning modules


There were limits to this study and this project. In my opinion, it was conceived beforehand as a tech-driven or solution-driven project already (e-learning on a website). Usually, if I were to work on this from the start, I would explore and learn about the problem and the landscape, and talk to many stakeholders before making the decision that it will have to be “e-learning”. 

After our team conducted this user experience research, I found that, CKD patients were not technical experts or who would sit alone and concentrate through e-learning courses like the users of Coursera. Though my team are satisfied with the content and learning sequences, the product itself lacked the management and marketing depth it would have gained from attention to issues of publicity, training, and after-sales service; it was driven only by the need to create the product itself.

I think the launching of the learning modules should be in the workshop or in a community setting, where there is a health educator, or head of each close-knit community leading the sessions gradually using our learning modules, contents, and videos that our design and media team produced. It could be made a more successful product as we hope in serving them to people who most needed it.