Our inspiration to create the CARE app was to improve the quality of care for paediatric patients by better supporting their caregivers. Paediatric patients are usually unable to take charge of their own health and the burden of care falls on their families. When the health of their child is challenged, parents and guardians often experience worry and engage in information and support seeking behaviours. In particular, parents of children with rare chronic diseases experience anxiety due to the limited knowledge about their child’s condition and feel isolated due to a lack of support. Parents often ask their healthcare providers to be connected with other parents of children with the same condition. Due to the small number children with a particular condition in a geographic area, such networks often do not exist. The few groups which exist remain inaccessible, non-specific and generally provide insufficient support.
What it does
The overarching goal of our app is to foster support and communication for patient families as well as connect them to events, resources, and the latest research on rare paediatric diseases. The app is centered around three main functions for families: (1) Connectivity, (2) Resources on Latest Innovation and Research, (3)Information on Local Events.
For families of paediatric patients, our app would provide a centralized platform for them to connect with local and distant families with similar situations so that they can ask questions, share experiences, and increase their understanding of the nature and future outlook of their child’s condition.
How we built it
We prototyped an app through Proto.io, a web-based service that allows application prototyping without the front end app-development process. This allowed us to test out and refine our ideas. Once we identified the problems faced by families with a child who has a rare paediatric disease, we created our solution focusing in three primary areas: (1) Connectivity, (2) Education, and (3) Local Events. From there we began to prototype our ideas through the Proto service. It was important for us as we created our app to make sure that it would be as simple as possible to use.
Challenges we ran into
At first, we had three different ideas on who our target audience was as well as what the potential solution to their problem would be. After brainstorming, refining, conversing, and consulting with mentors, we were able to identify not only who was at the heart of the issue, but the potential to help these families connect with each other and their community. Additionally, none of the three of us had a strong software foundation to begin independent construction of an app. After consulting with mentors at the genius bar as well as our peers, we decided to use the Proto service.
Accomplishments that we're proud of
We are really proud of overcoming our initial hesitations and uncertainties. The task at first was daunting and we definitely had to scale down and plan what steps we could take in 36 hours to assist the families of children with rare chronic illnesses. All of us are third year students who came from 3 different universities, 3 different backgrounds, all at our first Hackathon, who happened to meet Friday night. We are very pleased with our determination, dedication, and passion to deliver a product that has provides value to patients and families and also has future scalable growth and potential.
What we learned
Through this experience we learned to make realistic goals and plans which account for time constraints and our specific skill sets. We lacked software development experience but were able to use creative problem solving to overcome this. We also learned how to network with others and find peers with similar interests. Developing the CARE app taught us how to create a prototype of an app and increased our understanding of challenges faced by paediatric patients and their families and how these barriers can be removed using technology. Finally, we were able to identify areas where we currently lack expertise and would like to explore further in the future.
What's next for Care
Our next step would be to convert our prototype into a functioning app. We hope to expand CARE to include more diseases. We are currently looking to add Ehlers Danlos Syndrome, 22Qq11 deletion syndrome, juvenile arthritis and haemoglobinopathies, as well as Phenylketonuria and other inherited inherited metabolic disorders. We also hope to have the CARE app translated into multiple languages and develop it into a app which is available on many different platforms.
We plan on further expanding the educational functionality of the app by inviting researchers to give parent-directed talks about their work. This provides researchers a way to reach out to and interact directly with the families and patients affected by the diseases which they study.
We intend to leverage our connections with rare disease clinics at the Hospital for Sick Children in Toronto to get endorsement from expert healthcare providers and to promote the app to parents. We also intend to approach pharmaceutical companies which make therapeutic products for these rare diseases for their support with furthering the app. We also intend to use the app as a research tool by developing an anonymous data gathering feature. We intend to use the data collected to further our understanding of these conditions, their natural histories and how they can be better managed or treated.