Background

The BC Children's Hospital Research Institute at the Provincial Health Services Authority (PHSA) is inviting you and your child to participate in a pilot project to test the TrustSphere app for Type 1 Diabetes management. The TrustSphere app tries to give patients control of their healthcare. It does this by letting them view, share, and manage their own data in a safe and secure way. The app can help patients and their families to use patient generated data for their own clinical care and allow patients to provide their de-identified data to research to help other young patients with Type 1 Diabetes. Your participation could help you and your family manage your child's Type 1 Diabetes. 
 
When reading this document, “you” refers to patients over the age of 13 years, who can complete this form on their own, or both the patient and the patient’s legal guardian if you are completing this form together. The research team will obtain consent  from the patient and/or the patient’s legal guardian (if under the age of 13 years) for different parts of the app when appropriate.
 
The TrustSphere app is a virtual care platform that was developed with families, university researchers, and industry partners with support from the Canadian Digital Technology Supercluster. None of the researchers involved in this project will benefit financially from the project, but the project might be profitable. If it is, the organizations involved may profit but patients will not benefit financially. For more information about the project and its partners and to view this form again, please click here.

What does the TrustSphere app do?

Data from patient's devices used in the daily self-management of diabetes (such as glucose meters, continuous glucose monitoring systems, and insulin pumps), combined with data collected directly from patients through things like surveys or devices you wear (e.g., activity trackers) are important to help get the best possible health outcomes. TrustSphere asks you to share data collected from your devices and from the clinical forms you complete as part of regular care. The TrustSphere app will ask you to do this using the Careteam part of the TrustSphere app. In Careteam, your healthcare providers will be able to see the same information you see. You will also be able to see recommendations from your healthcare providers, your goals, treatment plans, etc. You are in control of who can see your data and what parts of your data they can see. You can also take part in research using the ‘MyData4Research' part of the app. This is optional and allows you to share your data for research purposes. This option is discussed in a separate research consent form.

Verifying your identity

Before you can use this app and share your data, we need to check your identity. This is done to help protect you and your personal information. To do this, the app will ask you to complete an identity checking process using either the mobile BC Services Card or Verified.Me. Anyone who uses this app needs to log in using their own ID. Patients over 13 years of age can do this for themselves on their own computer, smart phone, or other device. For the mobile BC Services card, patients under 13 years of age can also sign up in person or  the patient’s legal guardian can do it on their behalf.

Once this is done, you can choose what devices (sensors, insulin pumps, activity trackers etc.) you wish to connect to the system, and what data you want to share with your health care team using the Careteam part of the TrustSphere app. You can also use the app to view your appointments, get reminders about your treatment plan or get educational information, etc. if you wish.

Personal Information

This project involves collecting some of your personal information. We hope that collecting this information can lead to positive changes, which includes looking at differences in different groups so we can work on making things fairer for everyone. The PHSA respects the values and culture of all patients and recognizes that some groups face more challenges in receiving the care they need. This is why we collect information about gender, ethnicity, etc. The app can only collect data that you choose to provide such as data collected from the identity verification process and from the devices you choose to connect to the app. The personal information you will be asked to share is listed below: 

  • Full name and address. 
  • Gender, sex, self-reported ethnicity, and other information that could be used to identify you such as but not limited to living in a remote location, having a rare disease, challenges some groups may face when receiving the care they need, etc. 
  • Full birthdate so we can check in with you every year to make sure you still want to participate. This also tells us when patients no longer require a legal guardian to be involved in using the app, they are over the age of 13. .
  • Information collected over time from your diabetes devices like glucose meters, sensors, and insulin pumps that you link to TrustSphere via Dexcom, Glooko, or LifeScan portals, etc.
  • Personal health information like your health care number (PHN) and information your health care team would normal see (carbohydrate intake, height, weight, etc.) taken from health records within the PHSA. If health information about you is linked with or collected from bodies outside the PHSA (like your family physician or LifeLabs) we will ask about this beforehand in the app. It is always up to you what data you choose to share.
  • Information about users that does not identify you but contains information about your behavior such as page views, limited location data, app diagnostic data (such as when it crashes), and information about the device that is downloading the app (it is an iPhone or tablet for example). 
  • Personal opinions on TrustSphere app use.
  • Personal email addresses. 

Please note that some email services store email content, including personal information mentioned above, outside of Canada, where privacy and security standards may be different. If you have any questions about this topic, please contact PHSA's Director, Privacy Governance and Operations, Provincial Health Service Authority, privacyandfoi@phsa.ca or 1-855-229-9800
 
For the purposes of this pilot project, only authorized team members and technical support staff will have access to your personal information. Reports and presentations about the App will not include any information that could identify someone. The team may use a quote from your feedback you provide.  TrustSphere is a virtual care platform hosted in the cloud in Canada. It is managed by a variety of organizations including private companies that work in partnership with the PHSA and the University of British Columbia. It is governed by policies set by the PHSA and meets all privacy and security standards in the province of British Columbia. Data will be stored for 5 years since last use unless you ask for it to be removed. You can stop sharing data at any time. It will not be possible to remove data that has already been used for activities like optional research studies, but no additional information will be collected about you. If you have a question, please email trustsphere@bcchr.ca.
 
Your personal information is protected by our privacy law in BC. This law is called the Freedom of Information and Protection of Privacy Act (FIPPA). We are collecting your information under section 26 (c) and (e) of FIPPA. Participation is voluntary. You do not have to use the app as part of your care.

Questions and concerns

If you have questions about your information or the app please contact: Dr. Shazhan Amed, Investigator and Head, Division of Endocrinology, BC Children's Hospital, samed@cw.bc.ca (778) 867 5775.
 
For questions about the collection, or use of your information contact: Director, Privacy Governance and Operations, Provincial Health Service Authority, privacyandfoi@phsa.ca or 1-855-229-9800

Consent

When reading this document, “you” refers to youth, who can complete the form on their own, or to both you and your child, if you are completing it together. If you clicked “I agree” at the bottom of the form in the app, you are consenting (agreeing) to participate and to the collection, use, and disclosure of information you provide. You may stop participating at any time and withdraw your consent.