Privacy

Privacy Notice – United States of America 
May 27, 2021

Welcome to SCD Companion! This mobile app was developed and designed by Curatio Networks with input and advice from people living with sickle cell disease. An important feature of this app is the way in which your privacy is maintained. This notice explains what happens to your personal information when you use SCD Companion. If you have any questions, please contact Curatio’s Privacy Officer at privacy@curatio.me

1. Who controls the personal information you give to SCD Companion? 

Curatio Networks Inc. decides what personal information to collect and how SCD Companion will work. 

Curatio makes and delivers SCD Companion and supports users. Curatio does not share personal information from SCD Companion with third parties without the explicit consent of users. 

Curatio Networks Inc. 
1200 – 555 West Hastings Street
Vancouver, B.C.
V6B 1M1

Toll free 1-855-888-2031
International +1 778 985 7907
info@curatio.me 

Curatio Privacy Officer
privacy@curatio.me

2. What kind of personal information does SCD Companion collect?

SCD Companion collects personal information, including personal health information.

Required:

• Account information - user name, email address

• Basic information - gender, age range, location (country, state/region)

• Personal health information - SCD diagnosis 

Optional:

• Pain crises information

• GPS location 

• User story

• Interests

• Other conditions

• Height, weight

• Medications

• Hospital visits - date, hospital location

• Allergies

• Insurance information - provider, policy number

• User activity - posts, comments, likes, wellness tracking, survey participation, behavioural activity from use of the app

3. What do we do with your personal information?

Curatio uses your personal information when you give your consent (say it’s okay) and sign up for SCD Companion. 

Curatio uses your personal information to:

• create your SCD Companion account;

• match you with other users; 

• let you communicate with other users;

• let you track your pain crises, feelings and sleep over time;

• help you keep track of your doctors, hospital visits, insurance, and medicine; 

• create anonymous data about users and what users do in SCD Companion

• contact you with updates and information about SCD Companion; 

• understand how you use SCD Companion so we can improve it; 

• help you when you need it; and

• reply when you have questions or want to tell us something you like or don’t like about SCD Companion.  

Curatio knows who you are from the personal information you enter.  

Curatio uses information about you and what you do in SCD Companion to create data that doesn’t identify you or link you to your personal information. This anonymous data is used to understand the needs of the SCD community. We share and sell anonymous data generated by the use of SCD Companion to third parties, including Novartis Group companies (“Novartis”). Third parties don’t see your personal information so they don’t know who you are. 

Curatio does not sell, rent, or share your personal information. 

Curatio may make your personal information known to third parties if:

• The law says Curatio has to reveal it;

• Curatio believes it is necessary to protect your safety, the safety of other users, or the public; or

• Curatio has to reveal your personal information to protect and defend our rights or property.

4. Who can see your personal information? 

Only certain technical Curatio employees will be able to see your personal information. They will see it only if they need to support you or if their work on SCD Companion requires them to see it. 

Curatio uses other companies to help deliver SCD Companion to you. These other companies can see your personal information. They are only allowed to use your personal information to deliver SCD Companion.

You decide which personal information other users can see. You can go to the “settings” tab on the app and choose to show your basic information, basic health information, story and interests to other users.  

When you post something to SCD Companion, you can choose to share it with the whole community, your circle, just one or two friends, or you can keep it private. 

Other users cannot see your personal information in your Health Passport.

Curatio adds a Curatio Community Manager to your circle when you set up your account. Your Community Manager is there to support you. She or he can send private messages to the entire circle and can remove posts that are not good for the SCD community.

5. Adverse Events

The law requires that pharmaceutical companies report unexpected or unwanted  reactions  to health products, known as “Adverse Events”, or side effects, that happen to someone using their medicine or treatments.  

Your Community Manager will monitor what happens in SCD Companion and will report Adverse Events to Novartis. The Community Manager does not give Novartis the personal information of the user who has the Adverse Event. Instead, the Community Manager will contact the user in the app and give an email address for a Novartis Patient Safety Office. The user can then choose to contact Novartis or not to provide more information.  

6. How long do we keep your personal information? 

Curatio will keep your personal information while you are using SCD Companion. If you don’t use SCD Companion for five (5) years, Curatio will remove your account and personal information from SCD Companion.

You can also go into settings to cancel your account and ask Curatio to remove your personal information from SCD Companion. Curatio removes your personal information by erasing it from the active database. It will take 60 days for Curatio to do this. 

Curatio regularly makes copies of SCD Companion for safe keeping. Curatio keeps these copies in a safe place for five (5) years. It will take five (5) years from the time your personal information is removed from SCD Companion for Curatio to remove personal information from the copies. 

7. How do we protect your personal information?

Curatio follows the privacy law in Canada, where Curatio is located, and in countries where we do business, including in the United States of America.

Curatio:

• Puts your personal information into code (“encrypts it”) when moving and storing it. 

• Removes your personal information if there is no need to have your personal information. 

• Makes sure that only employees who need to see your personal information to do their jobs can see your personal information. 

• Makes companies helping to deliver SCD Companion promise to protect your personal information. They may use personal information only under Curatio’s instructions to deliver SCD Companion.

8. What rights do you have to your personal information? 

You have the right to see and edit your personal information in SCD Companion. You can see and edit your personal information by opening the settings tab in the app. You can also request a copy of your personal information there.

You can withdraw your consent for Curatio to keep using your personal information. You do this by cancelling your account on the settings tab in the app.

You also have the right to ask Curatio to remove your personal information from SCD Companion.

You can ask Curatio to correct your personal information.

If you have questions about your rights and how to use them, please contact Curatio’s Privacy Officer.  

9. Are computers used to make decisions based on your personal information? 

Yes, when you sign up for SCD Companion we get your consent for Curatio’s computers to use a set of rules to look at your personal information and match you to other users of SCD Companion. SCD Companion then suggests these friends to you in the app. You decide if you want to invite a suggested friend into your circle. 

SCD Companion also suggests you as a friend to other users. The other users might send you an invite. You decide if you want to accept an invite into another user’s circle.

You decide how much personal information to give to SCD Companion. When you provide more information, your friend suggestions will be better matches for you and more likely to accept you into their circles. Remember, you can always update your profile with more information when you are ready.

Curatio also uses a set of rules to identify profanity and inappropriate language in community posts and messages.

10. Is SCD Companion for children? 

By design, SCD Companion does not collect personal information from users who are under sixteen (16) years old.

11. Is your personal information moved to a country other than your own? 

Your personal information will be stored in the United States of America.

Your Community Manager will be in the United States of America or in Canada.  

Curatio employees who can see your personal information are in Canada.  

12. Where can you go to complain about how SCD Companion deals with your personal information? 

You can tell Curatio’s Privacy Officer if you are worried about SCD Companion and your personal information. 

If telling Curatio’s Privacy Officer doesn’t help, you can tell the Canadian Privacy Commissioner:

Office of the Privacy Commissioner of Canada.

You can also contact your local U.S. authorities to complain.