Curatio Connect SCD Mobile App

Privacy Notice – India
January 11, 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 your privacy is protected. This notice explains what happens to your personal data when you use Connect SCD. If you have any questions or grievances, please contact Curatio’s Privacy Officer at privacy@curatio.me

Who is the data fiduciary↓

Curatio Networks Inc., a Canadian company curatio.me

Personal data collected by Connect SCD ↓

AAccount data, basic demographic data, physical and mental health data, other optional data

What Connect SCD does with your personal data↓

With your consent, Curatio uses your personal data to:

  • Create your account and set you up on Connect SCD
  • Deliver Connect SCD services to you
  • Create anonymous data about users and what they do in Connect SCD to understand the needs of the SCD community

How some Connect SCD members are different↓

Some members have consented to participate in research activities before they join a community. These members share personal information and activities in the app with researchers who may also be active in the app. Research data collected for evaluation purposes (through surveys, interviews) are anonymized.

Who can see your personal data↓

  • Other Connect SCD users, when you decide to show them your personal data

  • Curatio Community Managers
  • Curatio technical staff who maintain the app
  • Curatio service providers who support the app

How long your personal data are kept↓

For as long as you use Connect SCD or until you tell Curatio to delete your personal data, or if you don’t use the app for 5 years.

How your personal data is protected↓

Curatio follows the privacy laws and regulations in Canada and India. Curatio only allows certain employees to see your personal data when supporting you in the app, securely transfers your personal data, and makes sure that companies that help deliver Connect SCD protect personal data.

Your rights to your personal data↓

You have the right to see, edit, and ask for a copy of your personal data. You can ask Curatio to correct your personal data and withdraw your consent for Curatio to continue to use your personal data.

How computers are used to make decisions based on your personal data↓

Curatio’s computers use a set of rules to look at personal data and suggest friends to users of Connect SCD.

Connect SCD and children↓

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

How and when your personal data are moved to countries other than your own↓

Your personal data will be stored in India. Your Community Manager will be in India.
Curatio employees who can see your personal data are in Canada.

Where you can go to ask questions or complain about Connect SCD and how we treat your personal data ↓

Privacy@curatio.me

1. Who is the data fiduciary 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 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

Toll free 1-855-888-2031
International +1 778 985 7907

privacy@curatio.me

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

  • 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 data?

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

Curatio uses your personal data to:

  • create your Connect SCD account;

  • match you with other users; 

  • let you to 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 does not 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. 

4. 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 for or allowed in the SCD community.

Curatio uses these companies to help deliver Connect SCD:

  • Amazon Web Services in India

  • 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.

  • 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. 

  • 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.

  • Google Analytics in the United States – This company collects information for Curatio about how you use Connect SCD. This company cannot tell who you are from what you do on Connect SCD.

5. 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 (5) 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 (5) years. It will take five (5) years from the time your personal data are removed from Connect SCD for Curatio to remove personal data from the copies. 

6. How do we protect your personal data?

Curatio follows the privacy law in Canada, where Curatio is located, and the privacy and information technology laws in India. We use technical and organizational ways to protect your personal data. 

Curatio:

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

  • 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. They may use personal data only under Curatio’s instructions to deliver Connect SCD.

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

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

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

You can ask Curatio to correct your personal data.

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

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

Yes, Curatio’s computers 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.

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

9. IS Connect SCD for children? 

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

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

Curatio uses service providers in the United Stated and India to deliver Connect SCD. Your personal data will be stored in India.

Your Community Manager will be in India. 

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

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

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