Soft Bones myHPP Mobile App
Privacy Notice
Last updated: Mar 21, 2024
Welcome to the myHPP mobile app! We refer to this App throughout this Privacy Notice as the myHPP App or the “App”. The myHPP was developed and designed by Curatio Networks with input and advice from Soft Bones, a US-based, non-profit patient advocacy group. We refer to Soft Bones as the “Sponsor”. An important feature of this App is the way in which privacy is maintained. This notice explains what happens to personal information when you use the myHPP App. If you have any questions about how the App uses personal information or if you would like to exercise your rights related to your personal information, please contact Curatio’s Privacy Officer at privacy@curatio.me
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Curatio Networks Inc., a Canadian company curatio.me
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Account information, basic demographic information, personal information including health information, and other optional information about members or about children from parents and guardians who use the App.
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With your consent, Curatio uses personal information to:
Create your account and enable you to use the myHPP App.
Create anonymous data about members and what they do in the myHPP App to understand the needs of the myHPP App community.
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Curatio staff who support the myHPP App.
Curatio service providers who deliver the App.
Third parties where necessary for safety or legal reasons.
Soft Bones does not have access to personal information in the App.
Other than to provide the App and enable you to use it, Curatio does not provide Soft Bones or any other third party with personal information.
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For as long as you use the myHPP App unless you tell Curatio to delete personal information, or if you don’t use the App for one (1) year. If you ask Curatio to remove all personal information from your account, you may no longer be able to use the App.
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For as long as you use the myHPP App unless you tell Curatio to delete personal information, or if you don’t use the App for one (1) year. If you ask Curatio to remove all personal information from your account, you may no longer be able to use the App.
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You have the right to access your personal information and to withdraw your consent. You can see, edit, and ask for a copy of your personal information in the App. You can ask Curatio to correct or delete your personal information.
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Curatio uses automated methods (sets of rules) to deliver curated content based on personal information you provide when setting up and using the account.
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The myHPP App is not meant to be used by children but it does collect and use personal information about individuals who are under eighteen (18) years old from parents or guardians who use the App.
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Personal information will be processed and stored in the USA.
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Who makes the Soft Bones App?
Curatio Networks Inc. makes the myHPP App and decides what personal information to collect, use, and share, how the App will work, and how to support members. Soft Bones is the Sponsor of the App and provides input and advice to Curatio on the myHPP App design.
Soft Bones believes that people must be at the center of research to drive health breakthroughs faster. The Soft Bones myHPP App collects anonymous information about the patient including basic demographics, symptoms, and information that can help to provide important insights about HPP to researchers. The anonymous information will be used to advance medical research for patients and the HPP community. By using this App, you’re helping to make a difference for yourself and others.
Other than to provide the App and enable you to use it, Curatio does not share personal information from the myHPP App with third parties, including Soft Bones, without the consent of members.
Curatio Networks Inc.
1200 – 555 West Hastings Street
Vancouver, B.C.
V6B 1M1
Toll free 1-855-888-2031
International +1 778 985 7907
Curatio Privacy Officer
If you are in Europe, Switzerland, or the UK, please see section 11 for contact information.
2. What kind of personal information does the myHPP App collect?
Curatio knows who you are from the personal information you enter when you sign up and use the myHPP App.
Required:
Account information about the member – username, email address, password
Basic information about the member or child – month and year of birth, location (country, state/region), role, relationship
Personal health information – member or child primary diagnosis
We collect the required basic and personal health information about members and children because it relates to medication doses and disease progression. This information helps us to provide services, including reminders, and relevant content.
Optional:
Gender – the option “prefer not to answer” is presented during sign up
Ethnicity
Height, weight
Location (city)
Medications
Symptoms (including date of onset)
Health tracking – sleep, exercise, pain, movement, stiffness, mood, stress, activity
Non-pharmacological (non-medical) interventions for symptom management
Appointment details
Other medical conditions, allergies, and insurance information
Personal notes, photos and documents, which may include personal health information
3. What do we do with personal information?
Curatio uses personal information when you give your consent (say it’s okay) and sign up for the myHPP App.
Curatio uses consent as the legal basis to process personal information and:
create the myHPP App account,
deliver curated content in the App,
create My Health Report,
create anonymous data about members and patients and what members do in the myHPP App,
contact you with updates and information about the myHPP App,
understand how you use the myHPP App 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 the myHPP App.
If you choose to use certain features, we will use personal information to help you:
keep track of and review things like health events and appointments; and
enable you to keep track of medications.
Curatio uses information provided by members, including personal information, and information about what members do in the myHPP App to create data that does not identify individuals or link individuals to personal information. Curatio uses this anonymous data to understand the needs of the myHPP App community. Curatio shares this anonymous information with Soft Bones, who uses it to provide important insights about HPP to researchers.
Curatio shares your personal information to provide you with the App and enable you to use it. Other than this sharing, Curatio does not sell, rent, or share personal information collected in the myHPP App.
Curatio may make 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 members, or the public.
Curatio has to reveal personal information to protect and defend our rights or property.
Where members are in Europe, Switzerland, or the UK, the legal basis for these types of processing may be different from consent.
4. Who can see personal information?
Only certain Curatio employees will be able to see personal information in the myHPP App. They will see it only if they need to support you or if their work on the myHPP App requires them to see it.
Curatio uses other third parties to help deliver the myHPP App to you. These third parties may be able to see personal information. They are only allowed to use personal information to deliver the myHPP App.
Curatio uses these categories of companies to help deliver the myHPP App, which are in the United States so there is a transfer of personal information:
Data hosting, backups and file storage services,
Notification and messaging services,
Analytics and app usage and performance tracking services, and
Customer support and ticketing systems.
Other members cannot see the personal information you provide in the myHPP App.
The myHPP App pulls information from trackers to create My Health Report. You can review the report in the App and then create a pdf.
By default, My Health Report is not shared with anyone.
To create a pdf version, you will be asked to provide a name, which is kept locally on your device and not sent to Curatio’s database. The name, if provided, will be added to the pdf.
You can choose to print and share the report using email or sms.
Neither Curatio nor Soft Bones assume liability for how you use the My Health Report pdf or with whom you share it.
5. How long do we keep personal information?
Curatio will keep personal information while you are using the myHPP App. If you don’t use the myHPP App for one (1) year, Curatio will remove the account and any associated personal information from the myHPP App active database.
You can also go into settings to cancel your account and ask Curatio to remove personal information from your myHPP App account. Curatio removes personal information by erasing it from the active database. It will take 60 days for Curatio to do this.
Curatio regularly makes copies of the myHPP App for record keeping. Curatio keeps these copies in a safe place for five (5) years. It will take five years from the time personal information is removed from the myHPP App for Curatio to remove personal information from these back up copies.
6. How do we protect personal information?
Curatio is subject to applicable privacy and data protection laws where we do business and where members are located.
We use technical and organizational ways to protect personal information.
Curatio:
Puts personal information into code (“encrypts it”) when moving and storing it.
Removes personal information if there is no need to have personal information.
Makes sure that only employees who need to see personal information to do their jobs can see personal information.
Gets companies helping to deliver the myHPP App to commit to protect personal information. These companies may use personal information only under Curatio’s instructions to deliver the myHPP App.
7. What are your personal information rights?
You have the right to access personal information you have provided in the myHPP App and to withdraw your consent. You can see and edit personal information by opening the settings tab in the App.
You have the right to ask Curatio to correct personal information.
You can cancel your account and ask Curatio to remove personal information from the myHPP App. You can do this by canceling your account on the settings tab in the App.
You can ask Curatio for a copy of the personal information you have provided to us, which we will prepare in a way that is usable if you want to move personal information to other services.
You may have other rights, including the right to be forgotten, depending on where you are located.
If you have questions about your rights and how to use them, please contact Curatio’s Privacy Officer at privacy@curatio.me.
8. Are computers used to make decisions based on personal information?
Yes, Curatio uses automated methods (a set of rules) to deliver curated content that matches the personal information provided when you set up your myHPP App account.
9. Is the Soft Bones App for children?
The myHPP App is not meant to be used by children but it does collect personal information about individuals who are under eighteen (18) years old from parents or guardians who use the App.
10. Where is your personal information kept?
Curatio uses service providers in the United States and Canada, in provinces other than Québec, to process and store personal information. These locations may have different privacy laws than your own country and may provide less protection for your personal information.
Curatio employees who can see your personal information are in Canada.
The email address you use for login will be stored locally on your phone. It is not collected into Curatio databases unless you sign up for our marketing communications.
If you want more information about Curatio’s service providers and where they are located, please contact our Privacy Officer at privacy@curatio.me
11. Where can you go to complain about how the Curatio handles personal information?
You can tell Curatio’s Privacy Officer at privacy@curatio.me if you are worried about the myHPP App and personal information. In the EU or UK, please contact our Data Protection Officer at privacyEU@curatio.me.
If telling Curatio’s Privacy Officer doesn’t help, you can contact the Canadian Privacy Commissioner or your local privacy or data protection authority. If you are in Europe, Switzerland or the UK, you can also contact Curatio using the following information:
Curatio Data Protection Officer:
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
https://www.datarep.com/data-request
We may update this Privacy Notice if we change the way we handle personal information. We will post changes to this page with the date of the change. If we make meaningful changes to the handling of personal information, we will notify you in the App and/or via email. We may have to get your consent again so you can keep using the App.