FORBIE (“FORBIE”) is a patient/scientist nonprofit that seeks to:
(a) bring together information about cancer
(b) accelerate our understanding of cancer by globally sharing de-identified and anonymized data about cancer
(c) empower people with cancer
(d) give everyone a better understanding of the global where, when, and what of cancer
We are passionately committed to protecting your privacy.
FORBIE is not a covered entity or business associate of a covered entity as defined in the Health Insurance Portability and Accountability Act of 1996 (HIPAA). FORBIE does not create, receive, maintain, transmit, or share Protected Health Information (PHI) as defined in HIPAA. This means that the information that you provide to FORBIE is not protected by HIPAA.
FORBIE does not share Personal Data (defined below) except in very limited circumstances such as to comply with a court order or court-ordered warrant, a subpoena or summons issued by a judicial officer, or a grand jury subpoena. FORBIE follows industry practices regarding the transmission, storage, and encryption of Personal Data.
Contacting FORBIE; Reporting Violations.
2. User Consent
3. Definition of Data Types FORBIE Collects
“Personal Data” refers to data that allow someone to identify or contact you, including, for example, your name, address, telephone number, e-mail address, as well as any other non-public information about you.
- Basic Site Usage. You can browse our Site without telling us who you are or giving us any Personal Data (defined above) about yourself. When you interact with us through your computer, our Site records certain non-identifying site usage data.
- Information You Can Choose to Contribute to FORBIE. If you join our Site you may voluntarily choose to provide Personal Data about yourself such as your name, contact information, and whether you have cancer. If you provide us feedback or contact us via e-mail, we will collect your name and e-mail address, as well as any other content included in the e-mail, so that we can reply to your email.
- Health, Fitness, Photos, Video and Audio Data Collected via Application. When you use our Application you have the option to write to Journals, Surveys, Symptoms and provide access to a fitness tracking device. The Application may store your health, Fitness, Photos, Video or Audio data for the purpose of reviewing this data on your own or with a clinician to avoid recall bias.
- Information Collected via Technology. When you visit the Site or Application, our web servers automatically collect limited information about your computer including the following:
Information Collected by Our Servers. To make our Site more useful to you, our servers (which may be hosted by a third party service provider) collect information from you, including your browser type, operating system, Internet Protocol (“IP”) address (a number that is automatically assigned to your computer when you use the Internet, which may vary from session to session), domain name, and/or a date/time stamp for your visit.
>4. Data Use
Personal Data. We use your Personal Data (such as your name) to administer the site and to respond to requests that you make (such as when you email us). We also use your Personal Data to, for example, show you your cancer timeline.
De-identified and Anonymized Data (“DAD”). A big part of FORBIE is the global sharing of “De-identified and Anonymized Data” (DAD) about cancer. DAD are not linked to individuals and are further anonymized by omitting and/or obscuring information. DAD do not, by themselves, permit the identification of individual persons. We create DAD from your Personal Data by excluding information such as your name, contact information, specific age, specific diagnosis, specific location, and specific date, that make, or could make, the data personally identifiable to you.
We can also make your de-identified and anonymized data available for future use by anyone in the world. If you do not want us to make your de-identified and anonymized data available for future use, change your settings at SETTINGS: Privacy. If you want us to permanently delete all the data you gave us, select the SETTINGS: Delete Account option. When you select this option, we will delete the data you gave us from our servers.
Please keep in mind that there is no way to “unshare” your de-identified and anonymized data once it has left our servers. It’s like sending a Tweet – once you have sent the Tweet, it will live forever on the internet. Likewise, once you have shared your Anonymous Data packet, it will live forever on the internet, where it can be seen and used by anyone who wants to (scientists, teachers, writers, journalists, artists, and everyone else).
5. Disclosure of Your Personal Data.
WE WILL NOT SHARE YOUR PERSONAL DATA WITHOUT YOUR PERMISSION TO THIRD PARTIES EXCEPT FOR THE LIMITED PURPOSES DESCRIBED BELOW.
6. Third Party Websites.
7. Your Choices Regarding Information.
You have several choices regarding the use of information on our Site:
- Cookies. If you decide at any time that you no longer wish to accept Cookies from our Site for any of the purposes described above, then you can instruct your browser, by changing its settings, to stop accepting Cookies or to prompt you before accepting a Cookie from the websites you visit. Consult your browser’s technical information. If you do not accept Cookies, however, you may not be able to use all portions of the Site or all functionality of the Site. If you have any questions about how to disable or modify Cookies, please let us know at the contact information provided below.
- De-Linking SNS. If you decide at any time that you no longer wish to have your SNS account linked to your account, you have the option to close your FORBIE account by clicking SETTINGS: Delete Account. Please refer to the privacy settings of the SNS to determine how you may adjust our permissions and manage the interactivity between the Site and your social media account or mobile device.
- Changing or Deleting Your Personal Data. You may change the cancer data you contributed to by going to the GIVE DATA page and changing your answers, and the clicking “Save”. You always have the option of deleting your account and deleting the data you contributed from our servers by clicking SETTINGS: Delete Account.
- Applications. You can stop all collection of information by the Application(s) by uninstalling the Application(s). You may use the standard uninstall processes as may be available as part of your mobile device or via the mobile application marketplace or network.
8. A Note About Children
We do not intentionally gather Personal Data from visitors who are under the age of 13. If a child under 13 submits Personal Data to FORBIE and we learn that the Personal Data is the information of a child under 13, we will attempt to delete the information as soon as possible. If you believe that we might have any Personal Data from a child under 13, please contact us at support @ forbie.com
9. A Note to Users Outside of the United States
10. Security of Your Personal Data
FORBIE is committed to protecting the security of your Personal Data. We use a variety of industry-standard security technologies and procedures to help protect your Personal Data from unauthorized access, use, or disclosure. We also require you to enter a password to access your account. Please do not disclose your Account password to unauthorized people. No method of transmission over the Internet, or method of electronic storage, is 100% secure, however. Therefore, while FORBIE uses reasonable efforts to protect your Personal Data, FORBIE cannot guarantee its absolute security.