Privacy Policy

Effective Date: 01/25/2025

OPEN (“We,” “Us,” or “Our”) values your trust and is committed to safeguarding your privacy. This Privacy Policy explains how we collect, use, disclose, and protect your personal information when you interact with our services. By accessing or using our website, platform, or services (collectively referred to as “Services”), you consent to the terms described in this policy.

Table of Contents

  1. What Information We Collect
  2. How We Collect Your Information
  3. How We Use Your Information
  4. Sharing and Disclosure of Your Information
  5. Cookies and Tracking Technologies
  6. Data Retention and Security
  7. Your Privacy Rights and Choices
  8. International Data Transfers
  9. Privacy for Minors
  10. Updates to This Policy
  11. How to Contact Us

1. What Information We Collect

We may collect the following categories of personal information:

  • Personal Details: Name, email address, date of birth, and demographic information (e.g. sex).
  • Health Information: Information about your cancer diagnosis, treatment history, and other health-related data to improved member access to treatment data, personalize services, and contribute to research. All health information is collected and stored in a de-identified manner.
  • Financial Information: Payment information (e.g., credit card details, mailing address,) for processing donations or purchases.
  • Internet Activity: Browsing history, device information, IP address, and interaction data collected.
  • Social Media Information: Information shared through social media platforms when you engage with our content.

2. How We Collect Your Information

OPEN collects information in the following ways:

  • Directly from You: When you create an account, participate in surveys, register for events, or contact us.
  • Third-Party Sources: Information shared by social media platforms or other organizations.
  • Automatically: Through cookies, web beacons, and other technologies when you browse our website or using our Services.

3. How We Use Your Information

We use your information for purposes including:

  • Improving the data available to all patients within the OPEN network.
  • Supporting cancer-related research by contributing anonymized or aggregated data.
  • Processing donations and managing participation in fundraising campaigns.
  • Improving our services through analytics and user feedback.
  • Communicating with you about updates, events, or opportunities to support our mission.

4. Sharing and Disclosure of Your Information

OPEN may share your information under the following circumstances:

  • For Research: Sharing de-identified data with the network, researchers, or collaborators to improve decision making and advance cancer research.
  • With Service Providers: Third-party vendors assisting with services like payment processing, data analytics, or IT infrastructure.
  • With Your Consent: Information shared explicitly at your request or with your approval.
  • For Legal Reasons: To comply with legal obligations, such as court orders or regulatory requirements.

5. Cookies and Tracking Technologies

We use cookies and similar technologies to:

  • Enhance user experience by remembering preferences and settings.
  • Analyze website usage and improve functionality.
  • Deliver targeted outreach and advertising based on user behavior.

You can manage cookies through your browser settings.

6. Data Retention and Security

We retain personal information only as long as necessary to fulfill the purposes outlined in this policy or comply with legal requirements.

OPEN employs industry-standard measures to protect your information, including encryption, access controls, and periodic security audits. However, no method of transmission over the internet is 100% secure, and we cannot guarantee absolute security.

If you suspect a data breach, please contact us immediately.

7. Your Privacy Rights and Choices

Depending on your location, you may have rights to:

  • Access, correct, or delete your personal information.
  • Opt out of data sharing or targeted marketing.
  • Withdraw consent for specific uses of your information.

To exercise your rights, contact us at [contact information].

8. International Data Transfers

If you are located outside the United States, your information may be transferred and processed in the U.S., where privacy laws may differ from your jurisdiction. By using our Services, you consent to this transfer.

9. Privacy for Minors

Our Services are not intended for children under 13. We do not knowingly collect personal information from minors. If you believe we have collected information from a child without parental consent, please contact us to request deletion.

10. Updates to This Policy

We may update this Privacy Policy periodically. Any changes will be posted on this page with the updated “Effective Date.” Your continued use of the Services constitutes your acceptance of the revised policy.

11. How to Contact Us

If you have questions about this Privacy Policy, please contact us at: support@openmeddata.com