Curatio Connect SCD Mobile App

Data Protection Notice – EU version

January 26, 2023

Welcome to Connect SCD! 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 we protect your personal data. This notice outlines what happens to your personal data when you use Connect SCD. If you have any questions or complaints, please contact Curatio’s Data Protection Officer at privacyEU@curatio.me

1. Who is the Data Controller for Connect SCD? 

Curatio Networks Inc. decides what personal data to collect and how Connect SCD will work. 

Curatio makes and delivers Connect SCD and supports users. Curatio does not share personal data from Connect SCD with third parties for their own use.                  

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 Data Protection Officer:

privacyEU@curatio.me

Curatio EU Member Representative:
DataRep     
72 rue de Lessard
Rouen, 76100
France
datarequest@datarep.com (with “Curatio” in the subject line)
https://www.datarep.com/data-request/

Curatio UK Member Representative:
DataRep
BPM 335368, 372 Old Street
EC1V 9AU
London, United Kingdom
datarequest@datarep.com 
https://www.datarep.com/data-request/               

2. What kind of personal data does Connect SCD collect?

Required:

• Account data - user name, email address

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

• Health data - SCD diagnosis 

Optional:

• Pain crises information

• GPS location 

• User story

• Interests

• Other conditions

• Health passport data

• Type of SCD

• Height, weight

• Doctor information

• Hospital visits - date, hospital location

• Allergies

• Latest pain crisis information

• Health report

• Insurance information - provider, policy number

• Other information - any other relevant information

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

3. What is the legal basis for processing your personal data?

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

4. What do we do with your personal data?

Curatio uses your personal data to:

• create your Connect SCD 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 Connect SCD;

• contact you with updates and information about Connect SCD; 

• understand how you use Connect SCD 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 Connect SCD.  

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

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

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

5. Who can see your personal data? 

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

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

You decide which personal data 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 Connect SCD, 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 data 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. They can send private messages to the entire circle and can remove posts that are not appropriate or allowed in the SCD community. They will have access to personal information you share on the app and personal information, including personal health information, on your profile which includes age range, location, gender, user role and SCD diagnosis.

Curatio uses these companies to help deliver Connect SCD:

• Amazon Web Services in Ireland (Standard Contractual Clauses)

• Aptible in the United States – Curatio puts your personal data into code (“encrypts it”) before sending it to this company for safe keeping. This company can’t tell who you are. (Standard Contractual Clauses)

• Apple Push Notifications in the United States – This company sends your messages to other users and sends Connect SCD messages to you, if you use an iPhone or iPad. This company does not keep the messages. (Standard Contractual Clauses)

• Firebase Cloud Messaging in the United States – This company sends your messages to other users and sends Connect SCD messages to you, if you use an Android device or web application. This company does not keep the messages. (Standard Contractual Clauses)

• Google Analytics in the United States – This company collects information for Curatio about how you use Connect SCD.  (Standard Contractual Clauses

If you would like more information, please contact privacyeu@curatio.me.   

6. How long do we keep your personal data? 

Curatio will keep your personal data while you are using Connect SCD. If you don’t use Connect SCD for five years, Curatio will remove your account and personal data from Connect SCD.

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

Curatio regularly makes copies of Connect SCD for safe keeping. Curatio keeps these copies in a safe place for five years. It will take five years from the time your personal data are removed from Connect SCD for Curatio to remove personal data from the copies. 

7. How do we protect your personal data?

Curatio follows the privacy law in Canada, where Curatio is located, and is compliant with the General Data Protection Regulation (“GDPR”) in Europe, the UK General Data Protection Regulation (“UK GDPR”) and Switzerland’s Federal Act on Data Protection. We use technical and organizational ways to protect your personal data. 

Curatio:

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

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

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

• Makes companies helping to deliver Connect SCD promise to protect your personal data. These companies may use personal data only under Curatio’s instructions to deliver Connect SCD.

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

You have the right to see and edit your personal data in the Connect SCD settings tab. You can also request a copy of your personal data there. You also have the right to:

• Withdraw your consent for Curatio to keep using your data. You can do this by cancelling your account and asking Curatio to remove your personal data from Connect SCD.

• Correct your personal data.

• Limit or “restrict” the processing of your personal data.

• Obtain a copy of your personal data to transmit to another service provider.

Withdrawing your consent does not affect our use of your personal data prior to withdrawing your consent.

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

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

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

Connect SCD 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 data to give to Connect SCD. When you provide more data, 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.

10. Is Connect SCD for children? 

By design, Connect SCD does not collect personal data from users who are under eighteen (18) years old.

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

Curatio uses service providers in Canada, Ireland and the US to deliver Connect SCD. Your personal data will be stored in Ireland.

Your Community Manager will be in the European Economic Area (“EEA”) or in Canada.  

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

The European Commission and the Swiss Federal Data Protection Commission have decided that Canada provides enough protection for your personal data to be safe there. 

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

You can tell Curatio’s Data Protection Officer if you are worried about Connect SCD and your personal data or you can contact your European Data Protection Authority. 

You can also contact the Canadian Privacy Commissioner:

Office of the Privacy Commissioner of Canada