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Privacy & Data Ownership
Privacy & Data Ownership

Patients and caregivers decide how to use their data on Folia

Luke Stephens avatar
Written by Luke Stephens
Updated over 2 years ago

At Folia, patients and caregivers own their data. Our team is highly committed to patient privacy and will never use your information without your permission.

From our Chief Technology Officer, Dan Toffling:

"We understand that Folia members are entrusting us with very personal and sensitive information during some of the most stressful and difficult times in their lives. So we have put a lot of effort into not just meeting, but exceeding the standards legislated under HIPAA (Health Insurance Portability and Accountability Act). All of our employees use Folia to track our own health or our children’s health, so we sit at the receiving end of good privacy and security practices as well."

Read more from Dan on our website about our commitment to privacy and security.

What is Research Sharing?

Research Sharing is a setting within your Folia profile that grants permission to have your anonymized data included in research. We only share de-identified and aggregated data for research, and only with your permission. 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.

Are there any rewards for participating in Research Sharing?

Yes! If you would like to participate you can earn up to $48/year in gift card rewards. See this article about Data Dividends for more information.

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 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 your 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.

Click here to learn how to turn off Research Sharing.

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