DiabHQ is on the way!
Over the coming months, WA children living with diabetes will be given the opportunity to participate in DiabHQ, an innovative new data platform that brings together different types of diabetes data and information for access by patients and families, clinicians and researchers through three customised portals.
What is the purpose of DiabHQ?
Patients and families will have access to an app that will allow them to view their own diabetes data, connect with their care team, access resources and learning, enrol to studies, complete surveys, receive reminders and much more.
Clinicians will be able to access all the different types of diabetes data in one place, helping them to care for young people with diabetes.
Researchers will be able to do important new research to help improve the health and wellbeing of people living with diabetes. They will also be able to identify patients suitable for research studies and make sure that anyone eligible is given an opportunity to participate.
What will DiabHQ be used for?
We will be collating diabetes data that includes diagnosis information, clinical data, device data and information collected for diabetes research studies. The data will include identifying data such as name and date of birth so that we can:
- Provide young people with diabetes and parents/carers with access to their own clinical data
- Link the different types of diabetes data
- Provide clinicians with access to all the different types of diabetes data in one place
- Connect to other data sets using data linkage, to broaden the research we can do
- Invite eligible people with diabetes to join research studies of interest
How will the data be kept safe?
We prioritise security and privacy above all else. DiabHQ will be managed by The Kids Research Institute Australia using Amazon Web Services (AWS), a globally recognised platform for medical research with state-of-the-art security features. Data will be encrypted and identifying details will be hidden. Data linkage will follow a process that ensures that privacy is protected, and health information provided to researchers will be de-identified.
Participating in DiabHQ
The next time you visit clinic, a member of the clinical team may invite you to participate in DiabHQ. You will be given a detailed information sheet and a clinician will explain the project to you. You will have the opportunity to ask any questions you may have.
Participation is voluntary and you can withdraw from the study at any time without giving a reason. Your decision will not affect the care you receive or your relationship with the clinical team.
When will DiabHQ be available?
The DiabHQ foundation layer has been completed and work has recently commenced on the patient portal. Over the next 6 months we’ll be working with young people with diabetes and their parents/carers to co-design the patient portal. If you would like to be part of this process, or if you have any questions about the DiabHQ project, please email queries@diabhq.org.au.