“Your experience as a patient or caregiver, which is often very difficult, has value. It can be used to be sure that you have an easier experience down the road, and that other people who are like you might never have to go through that experience.”

- Nell Meosky Luo, Founder and CEO, on the Angel Invest Boston podcast

THE BACKGROUND

Our organization was founded on the principle that your knowledge matters. Through our own experience as patients and caregivers, we realized there was an unmet need around collecting and organizing our observations in order to improve the care that every patient receives.

Consistent tracking of our observation improves care in the home on an individual patient/family level and in the clinic on a practice level. But, did you know that it also holds promise on a population level?

Our business model, which allows us to provide Folia to patients and families for free, relies on the research component. And now that we’ve built our product and completed the pilot, we want to directly recognize the value of patient and caregiver contributions to the healthcare ecosystem.

Enter Data Dividends.

 

FREQUENTLY ASKED QUESTIONS

+ Why are you launching this program?

Our operating principles at Folia include radical transparency, patient-ownership, and good stewardship.

By launching a revenue sharing program, we ensure visibility into data use and, for the Folia members who wish to opt-in to research, the regular practice of sharing value back with the members who help develop the dataset.

+ Who is eligible to participate?

At this time, U.S.-based patients or caregivers are eligible to receive a Data Dividend in their first calendar month if they have Research Sharing Settings turned "on." Caregivers who manage care for multiple patients can earn Data Dividends for each patient.

+ What level of activity is required in order to receive my Data Dividend?

We spoke with Folia members to understand their tracking goals and designed the program to reflect them - with some flexibility for expected life events (vacations, hospitalizations, etc.)

We heard from Folia members that it’s important to:

  • Track regularly, since that is the most accurate way to capture observations
  • Actively track or Batch Track about half of each month, especially when anything deviates from the norm

Based on this input, Folia members can earn a Data Dividend each calendar month by:

  • Logging in once a calendar week to either actively track or Batch Track
  • Tracking data for at least 14 days each calendar month

You can gauge your progress toward your Dividend eligibility by viewing your Folia Calendar.

+ How much are Data Dividends worth?

We are launching this program with a Data Dividend value of $4 each month in the form of a Visa gift card. And we expect that as the Folia community grows, we’ll be able to participate in more research which will increase the Data Dividend amount!

To minimize administrative costs/fees, we will send Dividends on a seasonal basis and you can expect your quarterly Dividend to be mailed to you on April 1, July 1, October 1, January 1. Visa gift cards have a minimum load value of $10, so if you are eligible for $4 or $8 that quarter, that value will be sent in a future quarter when your Dividend reaches $10.

+ Is my data truly anonymized?

We only share completely de-identified and aggregated data for research. This means that there are never any names, email addresses, phone numbers, or other personally-identifiable information included in the datasets that we share for research. Read more about our commitment to privacy and security.

+ What happens when I turn Research Sharing Settings to Off?

Your data will not be shared in any future research studies and you will not be eligible for a Data Dividend. If your data was contributed to a past research study, the researchers will not have access to any of your future Folia data.

+ Can I still receive Data Dividends if my data isn’t used for any studies?

Yes! We realize that some people will be eligible for fewer studies than others, and we don’t think this means that your knowledge is any less valuable. Maybe your data will be super helpful for a study 5 years from now!

+ What if I don’t want to contribute my data?

That’s entirely up to you. We’ve heard from Folia members that the majority of you are interested in advancing care for the broader community through their Folia data, and that you would like your clinics to have more insight into what goes on in between appointments. However, we respect anyone's individual decision and you can turn your Research Sharing Settings to Off in just a few clicks.

+ Can I see how Folia data is being used?

For transparency, we will publish descriptions of all active research projects, and once research projects are completed we will publish the names of the research partners.

+ What types of questions will researchers be trying to answer with Folia data?

  • How can we design more precise ways to match patients to the best individual treatment plan?
  • How do we get to a more specific diagnosis?
  • What side-effects exist for different treatments and combination of treatments?
  • What are the reasons for using or not using treatments?
  • What insights do patients and caregivers have that can improve care plans?
It makes me feel not so alone when there’s a bigger picture.
— Ashley, caregiver

Thank you to the Folia members and the patients, caregivers, providers, and ethicists in the broader community who gave us feedback on this program to help make it the best possible partnership between our company and our Folia members.

We are pioneering this new concept with the understanding that the program may need to change as healthcare advances, our product and the Folia community grow, and interest in real world data research increases. We invite your feedback as we continue to improve Data Dividends: patientownership@foliahealth.com !