Christina, the newest member of the Folia team, shares her experience as a caregiver and what moved her to join the company.
I joined Folia because I believe that medical care could be so much more effective if our providers leveraged data from daily living.
Between our two daughters, my family manages four conditions that range in severity but that, in total, require us to track over a hundred data points each week. (The photo is of our younger daughter at two days old, during her fifth diagnostic test.) As we’ve stepped into our role as caregivers, I noticed some pain points.
First: it’s a huge burden to manage multiple care plans. I started tracking symptoms and treatment regimens as a mental log since I have a pretty good memory. However, the episodes soon started blending together and I could no longer remember my observations beyond a couple weeks.
Second: the instructions from our pediatrician and specialists didn’t begin to cover everything I needed to know. As soon as we were in our home environment, I realized we lacked practical advice on side effects, getting young kids to take daily meds, collaborating with school, signs the treatment plan isn’t working, and how to go about adjusting it. Online support groups helped fill in some gaps, but we were all still guessing at what behavior and actions actually made a difference.
Third: some doctors didn’t trust my anecdotal data. In their eyes, my role as a parent somehow prevented me from being objective about pain and other symptoms. However it did help if I could show them anything quantifiable in writing.
Fourth: my insights on what’s working never get incorporated back into standard of care. If I could have a part in improving treatment efficacy or increasing our understanding of the important variables, then it will have been worth it to endure the sleepless nights, trips to urgent care, and care coordination.
I came across Folia through a friend of the company. Using the product has simplified my life (as a working parent, I will take all the productivity hacks I can get!), equipped my doctors with data to help them understand and manage episodes, and - as we grow the Folia community - will allow our home reported outcomes to contribute to important clinical research.
I’m so honored to be a part of Folia’s mission to harness the power of patients and families to transform care. Thank you for being a partner in building the Folia product and community, and for welcoming me to the team.