KOOS
Independence and Holistic Support for Arthritis Patients
KOOS is a support network for patient empowerment, focused on arthritis. Through KOOS, people can track their symptoms and activities, find personal strategies that work best for them, and collaborate with their medical professionals. KOOS also provides a platform for hosting sports and events, to encourage patients to stay active and social.
TIMELINE
Autumn 2020
5 months
TYPE OF WORK
Design Research
Service Design
UX Design
The Problem
Arthritis is often seen as a mild disease and a natural part of growing older. But many patients experience constant pain, mobility loss, and as a result, social isolation. When milder treatments are no longer enough, joint replacement surgery is presented as a final solution. But even surgery can’t prevent symptoms from returning, or starting in other joints.
Movement and exercise are generally accepted as the best way to manage arthritis, especially in early stages. Staying active can help manage pain, increase mobility, and postpone or even prevent surgery. But health practitioners are facing low compliance rates in the exercises they prescribe. To patients, these exercises often feel unproductive, and can be painful when just starting out. As a result, more intensive treatments are necessary, and recovery takes longer.
As Tallinn’s largest medical service provider, the North Estonia Medical Center is constantly facing this challenge. For our project, they presented us with an open question:
How can we best support arthritis patients, besides the medical treatments and referrals we are already providing?The Research
The North Estonian Medical Center gave us full freedom to pursue the topic and define our own direction. Our research started with a review of medical information and interviews with experts. We then developed a cultural probe, which we gave to five patients. We also hosted two workshops, one to explore the problem, and one to validate our findings. Our insights led us to a design brief, which we fulfilled in the final stage of the project.
Medical Research & Expert Interviews
We started with the basics, and read everything we could find online about arthritis. This helped us understand the medical profiles, the causes, and the available treatments. Based on this information, we planned interviews with experts to hear their side of the story.
The expert interviews highlighted a few interesting points. We noticed that each expert had a lot of trust in their own field, but raised questions with other treatments. This is confusing for patients, who rely on them for medical information. However, everyone we talked to agreed that targeted exercise is the best way to prevent and manage arthritis, especially in early stages.
Understanding the Medical Journey
Our early research helped us understand the medical journey of arthritis patients. One of our main insights is that the journey is not linear, but cyclical. After the initial diagnosis, patients start a process of management and prevention which we called the prolongation period. During this time, the patient is trying to postpone or prevent surgery, using physiotherapy, exercises, or medical interventions. Their success mostly depends on their motivation, and the tools and knowledge they receive from medical professionals. In some cases, surgery is necessary. While the procedure is often successful, it doesn’t prevent future complaints, which can send the patient back into the cycle.
A medical journey of arthritis patients.
Cultural Probe
"This is incredible! In all these years, I've never written out my medical history like this!"Next up, it was time to hear the patients’ side of the story. We sourced candidates for a cultural probe through personal connections and Facebook groups, and found five people to work with us. The cultural probe consisted of a five-day homework package that the participants worked on alone. Each day had its own themed worksheet and journal entry, which told us something about their daily lives and medical story. The probe helped us understand how the patients were experiencing their medical journeys, which turned out to be much messier and challenging than the stories we read online.
Download the full probe at the bottom of the page
Co-Design Workshops
The first workshop was set up to further explore these topics. We gave two participants our full attention to tell their story, and worked through various exercises to think about their needs, their relationship with the medical system, and the stories they told themselves, their peers, and their doctors.
The second workshop took place as we were working on a first draft of a solution. We wanted to create a more collaborative relationship between patients and doctors, so we used the second workshop to discuss this topic and actively look for design solutions. In this workshop, we put patients and professionals together, to create an open discussion with both sides of the story.
Insights
"My doctor doesn't understand my situation properly, but still makes all decisions for me. The only thing I can do is refuse to listen in return."The probe and workshops were the perfect tools for this project, because they gave our patients exactly what they had been missing all along: time to tell their stories. We learned that the impact of arthritis was different for everyone, but always too complex for short appointments and standardized interventions. This led to patients coming up with their own strategies, from disc-golf for stiff fingers to swimming, or simply the knowledge that the first hour of the day is always painful. Each patient became an expert in their own condition over time, but felt like their knowledge was dismissed by the medical professionals they worked with. We also learned that arthritis can be very isolating, while social contact stimulates activity, which is exactly what our patients needed! When we discussed these points with two physiotherapists during the second workshop, they immediately agreed, but told us they simply don’t have the time to provide the proper support.
The pain points in the support system of arthritis patients
The Design Brief
Based on our understanding of the pain points, we saw an opportunity to build a system that focuses on supporting arthritis patients in a way that makes sense for them. This includes long-term engagement from medical professionals, a network of service providers that know how to work with arthritis, and the opportunity for patients to connect.
We also wanted to give patients the tools they need to support their own experimentation. Movement is crucial, but standardized exercises are both ineffective and unmotivating. Instead, we set out to create the opportunity for people to find what works for them.
The design concept includes a service proposal that connects patients and medical services, hosted by the North Estonian Medical Center, as well as an application that helps patients find their best health strategies.
The Solution
Developing an App
While the KOOS service network is much bigger than its digital components, we did spend a lot of time thinking about how our mobile application would support our patients in their goals. We designed the app to support autonomy, but with a strong focus on community and collaboration.
Visual development of the interface
We based the pages of our apps on the needs we found in our research: tracking, reflection, personal strategies, learning, and community.
Lessons Learned
Social Design takes Time
This project had a huge emphasis on social design. Designing and organizing probes and workshops took time, but the results were eye-opening, and filled us with joy. Over and over again we learned that the answers are all out there, you just need to create space to listen.
What They See is What They Get
We noticed that the feedback we got was always directed at the visible aspects of our design—our sketches, schemes and screenshots. Whenever we struggled to communicate our broader vision, it was because we failed to put it on paper yet. We learned that it doesn’t matter what you’re talking about; whatever is visible in this moment becomes the real thing.