No textbooks can teach what Folia users taught me
Rebekah, the fifth member of the Folia team, reflects on her first year at Folia and shares what she learned from working with patients and caregivers as a User Success Specialist.
Rebekah during the summer before her senior year of college
When I first heard about Folia, I was a senior in college with a desire to become a pediatrician in urban underserved communities. My motivation to address the suffering of most vulnerable children had deepened when I witnessed health disparities as a Health Leads Patient Advocate at Massachusetts General Hospital and Boston Medical Center. While I connected low-income patients with the basic resources they needed to be healthy, I saw a need for a tool to help restore a sense of control in the face of so much uncertainty in their medical care and overall well-being. When someone told me about Folia, its patient-centered narrative and data-driven approach drew me in.
In an ironic turn of events, I became a patient myself during my first month as a Folia employee. A medical accident during LASIK surgery tore my right cornea into pieces and impaired my ability to perform tasks I had taken for granted. Keeping my eyes open and walking without tripping became a difficulty. In the clinic, I became small. I diligently rehearsed what to ask, only for the surgeon to interrupt me with a vague reassurance and a firm assertion that my concerns will have to wait until the cornea heals sufficiently to assess next steps. During the recovery process of the next six months, the powerlessness and uncertainty I experienced weighed more than the visual impairment and physical limitations did.
As I gradually ramped up to full-time work with patients and caregivers, I vowed to listen. I hoped that our users would feel fully heard. It was both heartwarming and heartbreaking to discover that many users had similar frustrating healthcare experiences. One caregiver told me: “I wish I knew about Folia 3 years ago, when I was writing down notes about every single diaper to prove to the doctors, who had not listened to me, that my daughter was chronically dehydrated.” Folia users have much to offer to healthcare providers, if only doctors can listen and use insights from patients and caregivers to drive better care.
“I wish I knew about Folia 3 years ago, when I was writing down notes about every single diaper to prove to the doctors, who had not listened to me, that my daughter was chronically dehydrated.”
My favorite days at Folia include pulling together user observations into personalized Appointment Guides. For example, if a user (let’s call her Monica) with cystic fibrosis recently switched to a new medication, she can share with the care team all the initial side effects, such as vomiting, coughing, fatigue, and diarrhea. Then, Monica can ask the doctor, “I’m worried the new medication is making me really sick. From looking at my Folia data, what do you think we should do?” Instead of vaguely responding with “side effects are normal”, the doctor can compare her specific side effects and their trends against data from existing literature. If a change in dose is necessary, Folia graphs will tell Monica’s whole story through a precise mapping of severity and characteristics of various symptoms against treatment use. Quarterly measurements of Monica’s height, weight, and lung function in clinic visits will never be enough to ensure the highest-quality care unless we also consider her pain from bowel obstruction, coughing severity, and other data on how CF affects her quality of life each day.
I love celebrating wins with users when they share how “showing up to the clinic armed with Folia data” improved conversations with their care team and restored a sense of control over their treatment plan. These conversations taught me much about the daily lived experiences of managing complex chronic conditions. The treatments and symptoms I help set up are more than just text on a piece of paper. They represent years of trying to figure out what works and doesn’t. A single data point on Folia graphs can signify hours of sitting through vest treatment or days of hospitalization with IV antibiotics. Our users' data carry incalculable value in their suffering and resilience, and my job is to hold these insights with the utmost honor and respect they deserve. No matter where I’ll go, I will remember how a patient’s story will never be complete without their own perspective and experiences at home.
If you are a user reading this:
Thank you.
No textbooks can teach me what you taught me.
Thank you for teaching me how much your knowledge matters.
Rebekah’s hand-written note to Folia users