DETECT Study
Want to help and make a difference? Sign up to the DETECT study.
Contribute Your Data
When your heart beats faster than usual, it could mean that you’re coming down with a cold, flu, coronavirus, or other viral infection. That’s the conclusion of recent medical research.
So wearable devices that measure your resting heart rate—made by Apple, Fitbit, Garmin, and others—might help scientists spot viral outbreaks, and also give you more insight into your own health.
Researchers in UCD, DCU and Beacon Hospital are collaborating with other researchers in the EU and USA on an international study that will monitor your heart rate and other data from your wearable device (like activity and sleep) and allow you to record symptoms like fever or coughing.
Our goal is to understand how well we can use data from your wearable fitness/wellness tracker to identify outbreaks of viral illness. We hope that an early warning system might someday give public health officials more time to take action.
If you have a wearable device that tracks your heart rate, please consider joining this study. Simply install our app, AthenaCX, and help out with scientific research that has the potential to improve the health of people everywhere.
Getting Started
1. Download the App
Download the AthenaCX mobile app from the Google Play Store or Apple App Store.
Enrol in the DETECT Study which can be found in the 'Open Surveys' tab.
2. Connect your Fitbit
After enrolling in the study, you will be asked to connect your Fitbit* device. Follow the instructions and connect your device to the AthenaCX platform.
*We hope to extend incorporate more wearables into this study in the future.
3. Answer the surveys
Whenever a survey becomes available, you will receive a notification. Answer these surveys as they become available. You may only get one per month or they may start to become more frequent, just keep an eye out.
Introduction:
You are being invited to participate in the DETECT (Digital Engagement & Tracking for Early Control & Treatment) Study. This is an observational study. This study does not provide treatment, nor does it require you to alter any aspect of your normal daily routine. It is a voluntary study for adults who are 18 years of age or older. You do not have to take part.
This document tells you about DETECT so you can decide if you would like to participate. Please take time to make your decision. Discuss it with your friends and family.
What is this research about and why are we doing this research?
This research study is part of a larger international research effort to help us understand more about early identification of viral illnesses such as the common cold, influenza, and covid-19. We are doing this research to determine if individual tracking of changes in heart rate, activity, sleep, and possibly other information already collected from smartwatches, activity trackers or other personal sensor devices can provide an early indication of such viral illnesses. This research has been motivated by a recent study that has demonstrated a very strong association between changes in resting heart rate (measured using Fitbit) and patterns of flu outbreaks in the USA.
This international research effort is being coordinated by a team in Scripps Translational Research Institute in the USA. In Ireland, the study is being led by a team of researchers in UCD, DCU and Beacon Hospital.
Why have I been invited to take part?
We are inviting adults over the age 18 to take part in this research. Specifically, adults who own a smartphone and regularly use a wearable fitness/wellness tracker to monitor their Heart Rate, Activity and Sleep are invited to take part in the study.
How will my data be used?
In this research study we will ask you to contribute the following data:
-
Your heart rate, activity and sleep data as measured using your wearable fitness/wellness tracker.
-
Information about your health and how you are feeling, as recorded via your answers to questionnaires and surveys in the study app.
When you contribute these data we combine them with data from other participants and will use it to develop statistical and machine learning models for early identification of viral illness.
It is important to note that this research study is being carried out in Ireland as part of a larger international study. The central coordinator of this larger international research programme is located outside the European Union, in the USA. We will share your data, following full anonymization, with the coordinator in Scripps Research Translational Institute in the USA.
We also plan to make an anonymized copy of the study dataset available on an open research data repository, such as Zenodo, at the end of the study. This means that your data will be available to other researchers in the future to use for further research purposes. At this point, it is not possible for us to identify who these researchers are, or what their specific research plans are.
What will happen if I decide to take part in the study?
If you decide to participate in the study, you will be asked to install a custom designed mobile application on your smartphone. In this mobile application you will first be asked to review and agree to the data privacy statement and complete the process of providing informed consent to take part in the study.
If you do agree to participate in the study we would like you to remain in the study for a 2-year period. Of course, you can stop participating at any time.
The first day you participate in the study we expect that it will take you approximately 30 minutes to review the study information, provide informed consent, link the study app to your fitness/wellness tracking device, and complete the baseline health survey. Each subsequent day that you interact with the app we expect that your participation will take no more than a few minutes.
Participation will involve the contribution of data from your wearable fitness/wellness tracker and the completion of health surveys as detailed in the table below:
How will we access data from your wearable fitness/wellness tracking device:
We will ask you to link your tracking device (eg Fitbit, Garmin, Apple Watch) to our app using an ‘API’ method. This means the data from your tracking device, which you will already have linked to your account with the device manufacturer, will also be shared with us for research purposes. We will always let you know which way we plan to access this data prior to you giving us permission to do so. If you choose to share the data from your devices, we may have access to historical data, potentially before you joined the study.
Once you have provided us with permission to access data from your fitness/wellness tracking device you will not have to do anything more in this respect. You just wear it as you normally would.
How will my privacy be protected?
Your contact information and data that directly identifies you will be separated from your study data and replaced with a random code before it is used for research purposes. All information used by this project will be protected so that it can only be accessed by authorized people. No published scientific reports or presentations will identify you directly. We will implement state of the art security measures to ensure that your data is kept private and secure, though we cannot guarantee that a data breach is not possible. Your data will be stored and transmitted using secure systems. The data will be securely stored in the European Union. Following full anonymization, your research data will be shared with the central study coordinator in the USA.
We will NOT access your personal contacts, other applications, text or email message content, or websites visited. We will never sell, rent, or lease your contact information
What are the benefits of taking part in this research?
We will make results of this research study available to you, whenever possible. The insights learned from analysis of the study may benefit viral illness outbreak tracking and may help people learn that they have an influenza-like illness more quickly in the future
What are the risks associated with taking part in this research?
The main risk in taking part in the DETECT Study is to your privacy. We take your privacy very seriously. We use advanced technologies to protect it. But we cannot guarantee your privacy. If there is a data breach, someone who is not authorized could get information about you. This chance is very small, but it is not zero.
Another potential risk is that participation in the study, and receiving a survey that has been triggered by a change in your heart rate, could cause you to become anxious about your health. This is particularly the case at a time when we are fighting a global pandemic. You should understand that, if we do detect a change in your heart rate and send you a survey, it does not necessarily mean that you are sick and need to seek medical care. The study is being carried out to help us understand the link between the data on your wearable device and your health, and the study app should not be considered as a replacement for a diagnosis. If you do receive a survey asking you questions about your health and your symptoms, you should not assume that something is wrong.
Can I change my mind and withdraw from this study?
Your participation in this study is voluntary. You can decide not to join. If you decide to join, you can leave the study at any time.
If you wish to leave the study you can access the ‘leave study’ function in the drop down main menu in the study app. There, you will be able to follow instructions regarding use of your data and leaving the study.
You do not have to sign this consent form. If you do not sign the consent form, you will not be able to join in this research study.
If you leave the study, no new data will be collected. If you choose to leave before your data has been fully anonymised and you wish for us to remove your data from the study database we will do so.
How will I find out what happens in this research?
We will publish the results of this study in scientific papers and can share copies of these papers with you if you contact us at the email address at the end of this information notice. We will also include updates on the study website. Please note that we will not be able to alert you directly once these papers have been published as we will not have access to your contact details. If you wish to access copies of the papers you need to check the study website periodically, or email us requesting that we inform you when they become available.
Contact details for further information:
Please contact the Principal Investigator, Prof Brian Caulfield, School of Public Health, Physiotherapy and Sport Science, Health Science Centre, UCD, Belfield, by sending an email to the following address:
Important Notes for Participants
European General Data Protection Regulation
Because this study takes place in Ireland, the European Union’s “General Data Protection Regulation” (GDPR) applies to our processing of your personal data, even if you do not live in Europe.
We process two kinds of information about you:
Special category personal data
This is information about you (age & gender), data from your wearable fitness/wellness tracker device, and your health and your symptoms if unwell.
We process this data in order that we can better understand how data from fitness/wellness tracking devices is associated with health, specifically with viral illness.
Please ensure that all information entered into the app is accurate.
In our app, you are given a unique identification code and this is the only means through which we can unambiguously link you to your submitted data on our data stores. This unique code will be accessible to you through your copy of the study app on your phone. Without it we will be unable to delete your data should you request us to do after you have uninstalled the app. If you uninstall the app and reinstall it you are given a new identifier and therefore the link with the data you submitted under the previous installation is now severed.
Because of the tight regulatory requirements placed on us, we need your consent to process data about your health, which means that if you do not consent you will not be able to use the app. If you decide to withdraw your consent you should delete your data first through the in-app feature provided and then email us with your request at gdpr@ucd.ie. When you withdraw your consent, we will delete all sensitive personal data we hold about you that you may have been unable to delete through app. You should then uninstall the app. Please note by uninstalling the app you will no longer be able to access your previously submitted data.
We share this data with the project team doing health research in UCD and with the following Irish institutions outside UCD:
-
Dublin City University (Professor Tomas Ward)
-
Beacon Hospital (Dr David Burke)
We will also share anonymised data with our collaborating partners in the USA, Scripps Research Translational Institute (La Jolla, California, USA). You should note that the USA has very different kinds of rules on data protection that may not protect your data in the same way as, or as well as, under GDPR.
When the research study has been completed (December 2022), we plan to make anonymised data available indefinitely on an open research data repository. This means that the data will be available to other researchers, who are not yet identified, for further research purposes that are not yet defined.
Because of the nature of the research we carry out, we are unable to set any particular time limit on the storage of your sensitive personal data, but we will keep it under regular review and ensure that it is not kept longer than is necessary.
Personal data related to communication and mailing lists
If you choose to contact us via email we will record and process your contact information for the following purposes:
-
Asking you for feedback on the app or conducting other forms of survey.
-
Keeping in touch with you about the app and its performance.
-
For maintaining records that consent for particular individuals was withdrawn at their request and that the associated data was deleted.
We will not send any emails not meant individually for you (for example marketing emails). We will not sell your contact information to third-parties.
Our legal basis for processing this information is that you, the data subject gives consent to the processing of your personal data for the specific purposes described in this privacy notice.
We keep your contact information for 6 years after the last communication with us, or the last use of the app, for liability purposes, then we delete it.
Third party processors for both kinds of information
We use third parties to process some of your personal data on our behalf. When we allow them access to your data, we do not permit them to use it for their own purposes. We have in place with each processor, a contract that requires them only to process the data on our instructions and to take proper care in using it. They are not permitted to keep the data after our relationship with them has ended.
These processors include:
-
Amazon Web Services (hosted in Ireland)
-
MongoDB Atlas
Your rights
Under the GDPR you have a number of important rights free of charge. In summary, those include rights to:
-
Access your personal information
-
Require us to correct any mistakes in your information which we hold
-
Require the erasure of personal information concerning you in certain situations
-
Receive the personal information concerning you which you have provided to us, in a structured, commonly used and machine-readable format and have the right to transmit those data to a third party in certain situations
-
Object to decisions being taken by automated means which produce legal effects concerning you or similarly significantly affect you
-
Object in certain other situations to our continued processing of your personal information
-
Otherwise restrict our processing of your personal information in certain circumstances
For further information on each of those rights, including the circumstances in which they apply, see https://www.dataprotection.ie/en/individuals on individuals rights under the General Data Protection Regulation.
If you would like to exercise any of those rights, please email, call or write to our data protection officer using the contact details given below.
The General Data Protection Regulation also gives you the right to lodge a complaint with a supervisory authority, in particular in the European Union (or European Economic Area) state where you work, normally live or where any alleged infringement of data protection laws occurred. The supervisory authority in Ireland is the Information Commissioner who may be contacted at https://www.dataprotection.ie/en/individuals/raising-concern-commission
Latest Revision: 29/10/2020
About us
Our address is: Insight SFI Research Centre for Data Analytics, University College Dublin, O’Brien Science Centre, Belfield, Dublin
The Data Controller is University College Dublin
Data Protection Officer: gdpr@ucd.ie
The principal investigator of this research project is Brian Caulfield.
Please note that this study is being carried out by researchers in the Insight Centre for Data Analytics and Beacon Hospital. Success are supporting the study by providing access to the AthenaCX platform, but are not sponsoring the research and will not have access to your data.