"We built this organization to fight for health data rights. We take our own data practices seriously."
— I ♥ Data
Who we are
I ♥ Data is a 501(c)(3) nonprofit organization dedicated to educating patients about their health data rights. Our website is located at iheartdata.org. We are the data controller for information collected through this site.
Important note: I ♥ Data is an educational nonprofit. We are not a healthcare provider, health plan, or health information exchange. We are not a HIPAA-covered entity. This website does not collect, store, or transmit protected health information (PHI).
What information we collect
We collect only what is necessary to operate our programs and respond to your requests. This includes:
Contact and inquiry information — your name, email address, organization, and message when you submit a contact, partner inquiry, or story submission form.
Newsletter subscriptions — your email address when you sign up to receive updates from us.
Story submissions — information you voluntarily share about your experiences with health data. We will always ask your permission before publishing or sharing your story.
Standard web data — basic analytics such as pages visited and general geographic region, collected in aggregate and not linked to individuals.
How we use your information
We use the information we collect to:
Respond to your inquiries and requests
Send newsletters and updates you have requested
Share patient stories on our website and in our materials, with your explicit permission
Improve our website and educational resources
Report to our board and funders on aggregate program activity (never individual data)
What we will never do
We will never sell your data. Ever. This is foundational to who we are.
We will never share your personal information with third parties for marketing purposes.
We will never publish your story without your explicit, written permission.
We will never use your information in ways you haven't been told about.
Third-party services
We use a small number of trusted third-party services to operate our programs:
Tally — we use Tally to collect form submissions on our site. Tally's privacy policy applies to data processed through their forms. You can review Tally's privacy practices at tally.so.
Email newsletter provider — your email address is stored with our newsletter platform. You can unsubscribe at any time using the link in any email we send.
Netlify — our website hosting provider. Standard server logs may include IP addresses, which are not linked to individual identities.
Your rights over your data
You have the right to:
Access the personal information we hold about you
Correct any inaccurate information
Request deletion of your information
Withdraw consent for communications at any time
Opt out of newsletter emails using the unsubscribe link in any message
To exercise any of these rights, contact us at our contact page.
Cookies
Our website uses minimal, functional cookies only. We do not use advertising cookies, tracking pixels, or third-party retargeting tools. We do not participate in behavioral advertising networks.
Children's privacy
Our website is not directed at children under 13. We do not knowingly collect personal information from children. If you believe we have inadvertently collected information from a child, please contact us immediately.
Changes to this policy
We may update this policy as our programs grow. We will post any material changes here with a new effective date. We encourage you to review this page periodically.
Contact
Questions about this privacy policy or our data practices? Contact us here. We take these questions seriously and will respond promptly.