Project 1

1. Empowering patients

The starting point for our project was the challenge of “Empowering Patients” on the Hackathon. The challenge emphasized the empowerment of patients in a healthcare system where there is a lack of focus on the patient experience.

Therefore, we were asked to create an AI-driven solution that would: ‍

Simplify the complexity of medical terminology and turn it into everyday language.
Help patients assess the trustworthiness of medical information they find on the internet.
Support accessibility and multi-language support, especially for languages other than English.

During the initial discovery process, we reviewed existing material and interviewed one of the mentors present in the hackathon, a medical researcher working with rare disease patients. In our chat with him, it became clear that patients who were most likely to struggle with the understanding of their disease were rare disease patients. Thus, we decided to narrow the scope of the project by placing our focus on patients suffering from rare diseases, refining our problem statement to the following:

How might we empower rare disease patients?

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2. My research process

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I kicked off the research process with secondary research, looking at scientific articles, as well as research reports from organizations such as IDEO on rare disease patients, patient experience and empowerment.

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We needed to better understand the daily struggles of rare disease patients. As this project took place in the middle of the Covid-19 pandemic with no access to hospitals or patients, it was impossible to conduct a field or ethnography study to observe rare disease patients. Therefore, I decided to take a digital approach to ethnography: I extracted posts from three rare disease Facebook groups, where patients and their parents found a community to discuss their struggles.

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Simultaneously, I conducted a competitive analysis of existing tools tailored for rare disease patients to be able to identify where the users pain points were not being addressed and where we could bring something new and competitive to the market.

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To create categories and codes for the analysis, I analysed a limited sample of posts from three Facebook groups. Based on the categories and codes derived from the initial reading, I assigned each post with at least one code and category.

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Next, I presented the findings of my research to my stakeholders, and we held a workshop to brainstorm the best solution to the struggles rare disease patients were facing. After a divergent thinking practice, we decided on an app that combines symptom tracking, real-time meetings, and fact-checked resources.

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Finally, I created paper prototypes for the UX design of the app. The UI designer of our group took my input to create a prototype of our CaReD app on Figma. After a quick-and-dirty heuristic analysis to improve the usability of the product, we had an initial version of the product.

3. What I found out

The top three results from my secondary research were as following:

Most rare diseases patients are children.
Rare disease patients and their families struggle to find a community to support them.
Diagnosis of a rare disease is difficult, requiring patients and their immediate family to become experts of their own rare disease.

The most common themes I identified throughout the thematic analysis of the Facebook groups were symptom sharing, symptom relief guidance, and emotional support:

26 % of all posts were patients looking to validate symptoms they are experiencing with others who shared the same rare disease diagnosis.
23 % of posts were inquiring the symptom relief methods people used outside of their regular treatments.
23 % of posts were seeking emotional support.

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4. What CaReD App does

Based on my research insights, we created the CaReD App. The app is designed to empower rare disease patients to become more proactive in their own care, by having ready access to trustworthy medical information and a record of symptoms, and to foster discussion around topics impacting the rare disease community such as how they deal with their symptoms and diagnosis.

CaReD offers three main features for patients with rare diseases and their loved ones:

Track feature records patient-reported information such as symptoms and their intensity, providing to insights on their symptoms in a form of a summary, e.g. frequency.
Connect feature uses an AI matching algorithm (KNN) to match rare disease patients or their loved ones with other users who have recently reported similar symptoms and diagnoses.
Resources feature provides rare disease patients with trustworthy health information tailored to users' rare disease and symptoms that are fact-checked by experts, designated with a “fact-check badge”.

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5. What my team and I achieved with CaReD app

The CaReD app project won an award as the best project in the track "Patient Empowerment."
For my contribution to the project, I was awarded with an Azure Maker badge by Microsoft, an award given in limited numbers to those who “embody the maker spirit of creativity, curiosity, and determination”. I also represented the CaReD team as a panellist at Microsoft Industry Circles Healthcare panel, "Innovation in action: how to accelerate the move from research to clinical practice".Sign up to watch the panel here.

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6. Challenges we faced

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. 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.

The hackathon lasted three weeks and took place online in the middle of the COVID19 pandemic, making it impossible to conduct ethnographic studies with real users - rare disease patients. Though such an approach would have been preferable, I took the resources available to us to explore other methods of user research: I conducted a Netnography on three Facebook groups instead of ethnographic research and heuristic evaluation instead of usability tests.

7. What's next for CaReD

In order to make our app idea come to life, we are working on ways to collaborate with existing rare disease community organizations. We are hoping that 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 also 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 natural-language processing and implement further data protection measures to ensure the protection of patients' data.

CaReD App: Care for rare diseases

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Context

Impact

Timeline & Location