“Chronic illness, when you experience a new symptom and you are trying to work out if it’s illness-related or normal person sick related.” We were inspired by this quote circulating in many rare disease-focused Facebook groups, such as a group on Guillain-Barrè syndrome, pointing out the fact that many rare disease sufferers feel anxious about their day-to-day symptoms. For example, a patient suffering from Ehler Dehler’s Syndrome mentioned feeling hesitant to share their symptoms with their doctors, because they felt they would not be taken seriously. Another patient with the same syndrome felt empowered to know that others with the same diagnosis were experiencing similar symptoms.
This inspired us to provide a patient-centered app with which patients and their families can track their daily symptoms, meet with others exhibiting similar symptoms with the same disease in real-time to provide each other with emotional support, while also empowering them with trustworthy and up-to-date medical information tailored to their specific symptoms. With our solution, we hope to empower patients to become more proactive in their care.
2.What it does
CaReD App offers three main features to patients with rare diseases and their families: Track feature records patient-reported information such as symptoms and their intensity. This data that our users will be inputting will be stored in a safe and secure HIPAA compliant cloud API. Depending on the user's preference, users will be able to have insights from their data in a form of a “summary.” Connect feature uses an AI matching algorithm (KNN) to provide a safe space for rare disease patients and their loved ones by matching them in real-time with other users who have recently had similar symptoms and diagnoses. This will allow a dialogue to be created around certain topics impacting the rare disease community such as how they deal with their symptoms and diagnosis, and empower patients to feel comfortable and confident sharing their stories. Resources feature provides rare disease patients with instant access to trustworthy health information resources that are fact-checked by our experts, designated with a “fact-check badge”.
3.How we built it
As a user-centered team, we employed design thinking methodologies in our work, starting with a discovery process. We conducted a virtual ethnographic study on three Facebook Groups, where patients with rare diseases and their parents shared their insights. Our analysis showed a high percentage of patients looking to validate symptoms they are experiencing with others who shared the same rare disease diagnosis and to find out which methods they were using to relieve their symptoms outside of their regular treatments.
Next was a design thinking session to look at the research results together and brainstorm the best solution to the struggles rare disease patients were facing. We decided on an app that combines symptom tracking, real-time meetings, and fact-checked resources. Following this, we created paper prototypes and went further into exploring which technologies could be used to enhance our digital product.
Finally, we created a prototype of our CaReD app on Figma. After a series of heuristic analyses to improve the usability of the product, we had an initial version of the product.
4.Challenges we ran into
One of the main challenges we faced as a group with members from seven different time zones was scheduling our meetings at a time when all of us were available. However, we solved this problem by dividing the project into smaller tasks that each member could contribute to in their own time while reserving meetings for brainstorming and coordination.
Moreover, in the limited time available, we were not able to conduct lengthy recruitment and interview processes with real users - rare disease patients. Though such an approach would have been preferable, we took the resources available to us to explore other methods of user research: We conducted a Netnography on three Facebook groups instead of user interviews and heuristic evaluation instead of usability tests.
5. Accomplishments that we are proud of
Though many of us were new to a Hackathon environment, we did quite a bit of learning together and managed to bring together a project we are proud of.
6. What we learned
Those of us who did not have a background in healthcare learned a lot about health-related topics, in particular on rare diseases. We also learned a lot about working together as a group and design thinking methodologies.
7. What's next for CaReD
In the future, we would like to collaborate with existing community organizations related to rare disease since community partners that are already in place. We are hoping our platform will act as a support system to the existing programs/organizations such as Rare Diseases Clinical Research Network (RDCRN), Therapeutics for Rare and Neglected Diseases (TRND), Rare Diseases Registry Program (RaDaR), Genetic and Rare Diseases Information Center (GARD).
We intend to add a Chatbot application that provides proactive check-ins and just-in-time resources based on the user’s emotional state and needs (using NLP) and implement further data protection measures to ensure the protection of patients' data.
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