Privacy Policy
MICArdiac Mobile Application (“Program”)
Note: this Privacy Statement applies to the Program during the clinical trial phase where users are restricted to only those persons who have consented to participate in “The My Intelligent CArdiac (MICArdiac) Study” (“Study”).
The MICArdiac (“Program”) is a messaging service provided by the University of Sydney (ABN 15 211 513 464) through the Westmead Applied Research Centre (“we”/“our”) to persons over 18 years of age who are eligible and have consented to participate in the Study.
The Program is supported with funding from Google through the Tide Foundation.
To run the Program, third parties provide technical support including (but not limited to) the Australian software developer iMSX, Twilio for sending and receiving messages, and webhosting provided by Amazon Web Services. Where you have permitted us to do so, we will use the services of GoogleFit, Apple Healthkit, Withings’s Health Mate or Mi Fit to collect specific data from your wearable devices. We use RedCap and the University of Sydney Research Data Store (via DashR) to store your personal information and data including images during and after the Study. Some or all of these organisations will have access to your personal information as described in this Privacy Statement.
Automated Decision-making:
The Program may use machine learning and artificial intelligence to make automated decisions about the messages you receive. Over time, the data collected from the devices you wear and the responses you give us (if any) will be processed and analysed so that the Program can learn and make decisions regarding which messages may benefit you the most.
Common questions:
1. What information do we collect?
A). Information collected directly from you (when you register and use the Program you may provide the following information directly to us):
– mobile phone number;
– first name and surname;
– gender;
– age;
– postcode;
– whether or not you are a current smoker;
– whether or not you are a vegetarian; – other general health, well-being and lifestyle information;
– any images you may provide;
– any responses you give us that rate each message;
– survey or questionnaire responses;
– if we contact you, any information that you provide us at that time; and
– if you contact us, any information that you provide to us at that time.
B). Information collected indirectly from you (if you permit us to do so, we will collect the following data indirectly from you including from your personal wearable devices) on a regular basis:
– blood pressure
– physical activity including step count, duration of exercise and heart rate
– height and weight
– cholesterol levels obtained from your blood sample
C). Information collected about you from third parties (If you permit us to do so, we will collect information about you from third party organisations that hold your health records including health information held by your treating hospital or medical centre and health services such as pathology and emergency departments):
– We measure the fidelity of message delivery (completion, message responses, dropouts, date and time of messages).
D). The Program may also create a profile of you consisting of new information about your use of the Program that has been generated by the machine learning and artificial intelligence features of the Program.
2). When do we collect your information?
A). The Program (when you register and use the Program), we will collect your information as follows:
– when you register with the Program in person and online;
– when we send and you open messages;
– when you rate the open message;
– if you contact us (e.g. sending us a t message or calling us);
– if we contact you;
– if you choose to participate in any surveys that we may invite you participate in; and
– when we receive data from your wearable devices (if any).
We may use a range of methods to collect this information including electronic forms, server logs, proxy logs, web beacons, machine learning and artificial intelligence systems, notes and cookies.
B). Third parties – The health information we receive from third parties will be provided to Us by way of secure data transfers to the University of Sydney secure data servers.
C). In person – when we visit with you (initial and follow-up meetings) or if you agree to attend a focus-group, we will collect information that you share with us.
3. How do we use your Personal data?
We and any third party collaborators / contractors use your personal information for the purpose of conducting the Study and for the development of the Program and for other purposes related to this primary purpose or as otherwise permitted at law.
We will be conducting research on the effectiveness of this Program and use your de-identified personal information and data to publicly disclose the results of the Study including making statements to the media, at conferences or in academic publications.
We may create a de-identified version of the personal and health information we collect from you which may be used for future research and to improve the quality and performance of the Program.
4. How does our Program work and how do they process your personal data?
The Program uses software to provide a set of tailored messages to you on your phone or tablet. The messages are designed to support people living with chronic disease. To do this, we collect information about you. The Program will analyse that information so that the messages we send you are tailored to your needs, delivering general health education, motivation and support appropriate for you.
Automated Decision-making:
The Program may use machine learning and artificial intelligence to enable some automated decisions to be made about the messages that you receive. To do this the Program will use the data collected from the devices you wear (if any) and the information you give us. The kind of decisions the Program will make are intended to increase your engagement with the Program so that you obtain the most benefit from it.
The Study investigators will have access to all of your personal information and data for the purpose of conducting analysis and reporting their findings/outcomes from the Study. When making public statements about the Study, your information and data will be de-identified.
5. Do we share your Personal data?
During the Study the Program and the data collected from you is accessible to authorised personnel including Study Investigators and software developers from:
– The University of Sydney
– Western Sydney Local Health District District
In addition, the following third parties provide support to run the Program. These organisations may collect, use and disclose your personal information in accordance with their privacy policies, available via the links provided in these general categories of use:
– iMSX
– Twilio
– Amazon Web Services
Supply of data to the Program collected from personal devices operating under one of the following but only in accordance with any permission granted by you:
– Apple Healthkit
– GoogleFit
– Withings’s Health Mate
– Mi Fit
Your information may be stored, used and processed outside of Australia for purposes related to the Study and collection of your data.
If you agree to join a focus-group or other meeting we organise, information you share will be received by other attendees.
If you meet with us virtually, we use Zoom.
6. How do we protect your Personal data?
The University and iMSX use a range of safeguards to ensure the information provided during the development phase is kept secure, confidential and is safeguarded from misuse or unauthorised access.
We may store your personal information electronically and in hard copy form. All electronic data collected for the Study is stored on a secure network at the University of Sydney or at the Amazon Web Services under the University’s control. All such information and data is only accessible to authorised personnel using password protection or locked filing cabinets.
7. How long do we keep your Personal data?
We will retain personal information and data collected from you for 15 years after completion of the Study in accordance with the record keeping laws of NSW.
8. Access, correction & complaints
To access or amend your information, or for information about our complaints process, please contact us by email warc.micardiac@sydney.edu.au or call 02 8890 3125, during standard business hours.
Please note, as a participant in the Study we may not be able to make changes to some of your information.
9. Amendment
This Privacy Statement may be amended at any time. The amended Privacy Statement will be posted on our website or otherwise provided to you.
This Policy Statement was last updated on 10 May 2023.
