Meet the 2020 Scholars

"What do you believe is the greatest unaddressed patient need in the CF community, and if you could, how would you try to fix it? Who would you partner with (e.g. public figure, organization) to help fix the issue and why?"

Knowledge is everything in today’s world, yet there is a lack of an effective way for CF patients to obtain knowledge about our condition. While there are multiple web-based resources, there is a gap in effectively delivering the information to patients with short, straight-forward advice or guidance. The internet will eventually yield the answer to a question anyone searches, and the person may even learn more as a result. While this can be good, the abundance of information about CF can be overwhelming and taxing on a patient’s mental health, discouraging learning. Why is this the case? If a patient is trying to discover what exactly a medicine does, it is inevitable that they will come across a statement like “can prolong life for a few years”. For me, that is depressing. I want to learn, not contemplate my mortality. I don’t think this is unique to me, and it discourages patients from finding answers they may need. I want to create a website (idealistically partnered with CF physicians to vet information and publicize the site) containing links for questions a patient has, like how to clean certain devices or how a medicine works. The site would skip the potentially depressing information and instead take the patient straight to the knowledge. It would be a database of pre-picked answers. This can be expanded to include doctor-approved quick tips like how to travel with a vest or techniques to keep an adherence to a treatment schedule.