1. What if I need more assistance downloading and using the app?

Please contact Brian Hansen at brian.hansen@ahs.ca.

2. Who are the principal research investigators in this study?

• Vineet Saini PhD DVM, Scientist Lead, Research and Innovation, Alberta Health Services 403.955.0857, vineet.saini@ahs.ca
• Nathaniel Osgood PhD, Associate Professor, Computer Science, University of Saskatchewan 306.966.6102, nathaniel.osgood@usask.ca
• Melissa Potestio, PhD, MSc, Research/Surveillance Lead, Alberta Cancer Prevention Legacy Fund, 403.690.4721, Melissa.Potestio@albertahealthservices.ca

3. How is this study funded?

The funding of this study is provided by Alberta Cancer Prevention Legacy Fund at Alberta Health Services.

4. How will I benefit if I take part in this study?

The direct benefit will be your access to the online dashboard, which provides you with your health profile (e.g. physical activity level, sedentary behaviour, and mobility etc.) generated via inbuilt-sensors on your phone. Your access to the website and dashboard will be valid at any time after the study, unless you choose to revoke your account and remove your data. Any new analysis, findings, and/or visualizations will be shared with you through the website.

5. Do I have to participate in this study?

Your participation in this pilot study is voluntary. You may withdraw from the study at any time and doing so will not jeopardize your health care or your ability to access other health care services.

6. What else does my participation involve?

There is no other involvement required, beyond what is previously stated in this document.

7. Will I be paid for participating, or do I have to pay anything?

No, there are no monetary incentives or honorariums that will be paid to you, nor do you have to pay for anything in this study.

8. Will my records be kept private?

Yes, any information that we collect about you during the pilot study will be kept confidential. Only you and those in the research team will be able to access your information. Data from all participants will be combined and results of individuals will not be presented. Only aggregate data will be presented. Any information published or presented regarding this study will be anonymous and will not contain your name.

If you wish to withdraw, please notify study organizers immediately. If you withdraw at any time during or after data collection, all related data will be destroyed.

9. If I suffer a research-related injury, will I be compensated?

In the event that you suffer injury as a result of participating in this research, no compensation will be provided to you by the University of Calgary, Alberta Health Services, or the Researchers. You still have all your legal rights. Nothing said in this consent form alters your right to seek damages.

The Alberta Community Health Survey is conducted every year by Alberta Health Services for the collection of health information in Alberta. This survey is conducted using the random-digit dial (RDD) telephone survey method where Albertans are interviewed for their health information on their landlines or cell phones. Unfortunately, many Albertans do not respond when contacted via landlines or cellphones and we have noticed decreasing response rates over time.

With an increase in the use of smartphones, there are many smartphone apps that can collect a wide variety of health information. the Healthier Together Cancer Data Tool is one such health monitoring app designed by the University of Saskatchewan and currently being used for the collection of health data in North America. The app can automatically record health information in terms of physical activity and location using sensors in the smart phone. It can also send out surveys containing various health-related questions. However, the feasibility of using the Healthier Together Cancer Data Tool for collecting health data in Alberta has not been studied to date. We don’t yet know the strengths and weaknesses of using the Healthier Together Cancer Data Tool.

The Healthier Together Cancer Data Tool will periodically send you surveys containing health-related questions. The first set will ask questions mainly related to your personal wellness, physical activity, fruit and vegetable consumption and knowledge about cancer prevention etc. This set of questions will also contain simple demographic questions (e.g. your age, sex, education, and income etc.). The second set of questions will be around understanding reasons for some of the responses to the questions in the first set. Some questions will also be asked to understand your comfort/discomfort and satisfaction with using the Healthier Together Cancer Data Tool as a health information collection tool. In general, no sensitive questions will be asked.

The surveys will pop-up automatically on your phone, and you can respond when it’s convenient for you. When a new survey arrives, you will be notified the same as you would be notified of a new email or a text message. You can choose to answer any or all of the questions right away, or at a later time.

In order to suspend health information collection, simply open the Healthier Together Cancer Data Tool and click on the snooze button at the top of the app. This will suspend data recording for the amount of time indicated on the screen. To suspend it longer, simply tap again. When the phone is snoozed, nothing is recorded. If you choose to leave your phone behind without snoozing this will provide us with incorrect data, which could bias our results.

This study also involves, with your permission, the recording of your location and physical activity level using the phone. Every five minutes, the phone will record data from the onboard sensors, including GPS and Wi-Fi for location, and the accelerometer, magnetometer (compass) and gyroscope (orientation) to determine generally what you are doing (i.e. your physical activity levels). This will require no effort from you other than keeping the phone charged and with you as you normally would.

GPS directly records location when outdoors, or indoors in lower density (e.g., house) environments with an accuracy of around 10 meters. Wi-Fi can be used to estimate your position indoors to a similar accuracy if enough Wi-Fi routers are present. The accelerometer, gyroscope and magnetometer can be used to detect how the phone is moving. This motion can be used to infer simple things about your activities such as whether you are carrying a phone or it is on a table, whether you are sitting, standing, walking or running, and whether you are turning or moving in a straight line. We cannot detect finer details such as whether you are walking and vacuuming, or the difference between dancing and running.

Your data will be uploaded to servers at the University of Saskatchewan. You can access all the data collected from your phone using an online dashboard at any time during and after the end of the study. The dashboard shows the data collected on your daily activity, your location history, and responses to the survey questions. As the development of the dashboard continues and additional analysis is included to it, you will have access to the new visualizations right away. Using the dashboard, you can also request to delete part or all of any data that you are uncomfortable reporting. Upon request, we will delete all specified data and no record or backup of the mentioned data will be held at any of the servers.

There are three potential risks for participating in this study. The first is the potential for us to observe you committing illegal acts as part of the ongoing experiment. While we will not be looking for anything like this, we may stumble across data that shows you in a bank during a robbery. We cannot guarantee your anonymity if we see a behaviour which we judge is a risk to yourself or others. We will also comply with all legal search and seizure (e.g., warrants and summons) from law enforcement agencies for our data. Remember, if you do not want your GPS data  to be recorded, you can opt out of this part of the study or you can just press the snooze button.If you forget to snooze data collection and later on decide to delete part of all of the recorded data, you can always go to online dashboard to do so.

The second potential risk is a loss of anonymity. All the data we collect will be strongly anonymized. However, there is the possibility that your data could be fully or partially de-anonymized due to the richness of the data we are collecting. By tracing your daily movement patterns, it is not difficult to determine where you live, where you work/study and where you spend your leisure time. From this it is not difficult, by searching publicly available records such as phone directories, to determine who you are. To address this, all researchers listed on this document commit to not attempting to de-anonymize the data. Furthermore, we commit to ensuring that anyone else who has access to the data now or in the future will make the same commitment. Finally, we commit to not publish any representation of the data which could lead to de-anonymization, and to hold any others with access to the data to the same undertaking. If you are uncomfortable with part or all of the data you have provided, you can always permanently delete them using your online dashboard. You also have the option to opt-out from the sensor-based data such as GPS from the Healthier Together Cancer Data Tool. By choosing to do so, the Healthier Together Cancer Data Tool will not collect any data you have specified unless you change your mind again.

The third potential risk is that phones may be lost, stolen or hacked. Your data on the phone is stored in a strongly encrypted manner until it is uploaded. You don’t have to worry about the data we are collecting if the phone is stolen or lost. Once the data has been uploaded it will be stored on secure servers at the University of Saskatchewan for a period of at least five years. When the data is no longer useful, it will be deleted.

If you have questions about this research study, please contact Brian Hansen at brian.hansen@ahs.ca.