Unified plan of care for patients with neuromuscular (FSHD) disease
The Client
The Samen Sterker project The organization believes that "together we can be stronger" and improve the quality of life for millions of people that have any of the 500+ rare chronic Neuro Muscular Diseases (NMDs). At this moment ‘Samen sterker’ focuses on a sample of this global group, namely people with FSHD and SMA (two types of diseases) in the Netherlands. Innovation Catalyzer Innovation Catalyzer is a consultancy firm that helps large organisations, SMEs and Start-ups innovate and grow in a sustainable way through, a.o. consultancy, strategy design, training and workshops.
Problem Space
The objective of the Samen Sterker project is to improve the quality of care and thereby quality of life for people and patients with SMA and FSHD in the Netherlands. These diseases require specialised care that is often offered in different places that don’t communicate with one another. This can lead to many serious issues: for example, if a person with a neuromuscular disease has emergency surgery at a general hospital, the surgeon needs to be properly briefed on the patient’s exact condition and on the other therapies that they are receiving at other institutions.
Design rationale
How can we help the Samen Sterker project strengthen their networks of patients and caregivers using digital tools? How can we bridge the communication gap between the different types of healthcare professionals that treat the same patient with FSHD/SMA and make sure that all information is shared efficiently, securely, and in a confidential way (when necessary)? How do we make sure that a patient can communicate their needs/wants also to medical professionals outside the Samen Sterker network?
Research
User Research and Interviews
My colleagues and I quickly began research on neuromuscular disorders, with a focus on FSHD and SMA. We researched the Dutch healthcare system after learning more about the disease to gain a better understanding of how the system operates, appointments, data privacy, referrals, and cross-organizational communication works.
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Analysis
Aligning Together
We employed both field research and co-creation workshops to better understand the diverse demands, restrictions, and pain spots of both patients and the medical professionals who treat them. We spoke with a general practitioner at Amsterdam University Medical Center, a physiotherapist, and a doctor of rehabilitation at Radboud University Medical Center. We also shadowed patient appointments with doctors, interviewed patients, and took part in the Samen Sterker ideation workshop, where we brought all of our prior research and used it in a role-playing exercise to find a potential solution that benefits everyone.
Users in Mind
It was crucial that we created personas in order to keep our attention on the users and prevent letting our own needs trump those of the users.
Market Analysis
To emphasize the characteristics, benefits, and structure of comparable solutions that facilitate contact between medical experts and share medical data, I reviewed existing products. This made it easier to comprehend the network's trajectory and identify our product's unique selling proposition and the ways in which it benefits customers.
Ideation
Designing for Humans
By developing an information architecture to specify how the features will fit the platform, we took a more productive approach to give the platform structure. This included both the patient’s and medical experts’ interactions in the first and third lines.
Point of View Statement
Based on our discoveries a point of view was drafted.
I met Victor a 32-year entrepreneur who owns an ICT equipment supply business. He was surprised to realize that in 2020 banks are still using manual documentation to give out loans. He wonders if this means that the banks are not utilizing the power of technology to make the loan application process easier. It seems like he needs a way to secure loans for his business effortlessly from the comfort of his home.
How Might We statement
To generate creative solutions while keeping the team focused on the right problems to solve, we decided that the best approach will be to use a How Might We statement to suggest a possible solution.
Prototype
The wholesome experience
The solution improves the indoor air quality of users sustainably, thereby improving users' quality of life.
Based on what we learned through getting to know patients and the various medical care lines involved, we realized how difficult the problem area is, as there are many interconnected difficulties and substantial pain points from both parties. Throughout the process, we were able to develop various ideas through ideation sessions. We aimed to focus on the flow and functionality of the webapp at this stage, where medical specialists and patients meet on a quarterly basis to establish a unified care plan while keeping the patient's lifestyle goals in mind. We were able to accomplish this with the support of low-fidelity wireframes. This allowed the team to rapidly test and develop our ideas before moving on to properly design the interface.
Abstract to Visual
In the care plan, each patient’s care line team has an overall care plan, which will describe the goals of the patient and medical professionals. Each medical professional also has an individual action plan where they describe what they’ll do during and between their one-on-one appointments. When an action plan is not going well, they’ll be able to update their status on the patient’s difficulty level, which prompts other team members to be notified. We found through interviews that medical carelines (especially rehabilitation experts) would like to intervene and offer advice to others when things aren’t going well.
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