WE'RE A TEAM OF SIX FOCUSED ON IMPROVING THE CARE THAT CHRONIC DISEASE PATIENTS RECEIVE.
At Folia, we believe that the daily observations made by patients and their family members have the power to substantially improve care. Every day, you experience the outcomes of your treatment plan – you know how things are going. Our goal is to help you to capture your daily insights in an organized way.
We started Folia because of the experiences of our own families.
My younger brother has CVID, an immunodeficiency. Over the course of 20+ years, my mom has become an honorary immunologist – with bookcases full of journals detailing my brother’s symptoms and treatments. Our family’s journey with healthcare has been complicated, and I ultimately decided to go to Yale to study chronic disease. While there, I realized that there was a fundamental hole in our ability to improve the treatments available for many chronic conditions: we didn’t have enough data on how well treatments worked for specific types of patients. Eventually, I put two-and-two together, and recognized that the data I was looking for did exist – it was just in my mom’s head!
Nell put out an ad for a co-founder – someone with coding experience and a first-hand understanding of what it’s like to deal with a chronic condition. I was looking for an opportunity to work on something meaningful, and as the father to a child with Down Syndrome, I was drawn to the idea of improving care quality by empowering other families. I decided to take the leap!
That was November of 2016. Since then, with the help of dozens of patients, families, and care providers, we’ve built Folia – a system designed by families, for families, to use their knowledge to improve the care that they receive.
OKAY – HOW DOES IT WORK?
The primary goal of Folia is to help you quickly capture the observations that you make every day – how the coughing was, whether treatments were completed, overall mood – using a set of personalized multiple-choice questions. You have full control over the questions that you want to answer – we recommend some questions based on the condition that you’re managing, and you can add any others that are helpful to you. Over just a few weeks of using Folia, you’ll build a comprehensive database of what we call “home-reported outcomes.”
You can bring this information to your next appointment using the Appointment Guide – a report on your Folia data that we developed alongside doctors and nurses, to make sure it’s helpful in the context of the clinic. What you track really matters – we’ve already heard from users who have made changes to their treatment plans based on the information that they’ve tracked in Folia!
[To see a sample Appointment Guide, go to: www.foliahealth.com/sample-ag.]
The knowledge that you track using Folia is not only useful in the clinic – it’s also valuable to improve the evidence that’s available for research on your condition as a whole. In other words – what similar experiences are patients and families having, and how can we use this information to improve the treatments that are available? This is important, because right now, we’re setting the standard of care based only on clinical data captured a few days out of the year, not on the day-to-day experiences of your life.
Once we start doing this type of research (likely in 2019), there will be a new section of the app that will have a list of our current research projects, and the ability for any user to opt-out. (Obviously, in order to protect your privacy, any research that we do will only use the tracking data itself - not any personal info.)
GREAT - SO WHAT CAN I DO?
Honestly, the best thing you can do to help this movement is to use Folia. It’s important that we show the greater community that patients and families care about tracking their observations and adding their voices to the care conversation.
We’d also love it if you would share Folia with other people that you know who would benefit from it. Our focus is CF right now, but we’re open to registering people dealing with other conditions, too.
Invite code to share with CFers: FOLIASUMMER18
Invite code for others: EXPLORATION18
That’s all for now! Please let us know what you think – your feedback is necessary to help us make Folia the app of your dreams. 😊
Nell, Dan, Christina, Peter, Rebekah, & Adam