Duke Health (“Duke”) knows you care about how your information is used and shared. We take protecting your privacy very seriously. Please read the following to learn more about how we use and protect information collected through Duke ResearchKit or ResearchStack Apps (“Apps”).
By using the App in any manner, you acknowledge that you accept the practices and policies outlined in the Privacy Policy (this “Privacy Policy”).
You consent that we will collect, use, and share your information as described in this Privacy Policy and as outlined in the Informed Consent process specific to and embedded within each App.
This Privacy Policy covers our treatment of personally identifiable information ("Personal Information") that we gather when you are accessing or using the App. This Privacy Policy does not apply to the practices of companies or institutions that we do not own or control, or to individuals that we do not employ or manage.
Your use of the App will allow you to provide us with Personal Information as outlined within the Informed Consent for each App. The App collects your Personal Information for the purposes of a research study being conducted at Duke (the “Study”). If you choose to use the App to provide us with any Personal Information, you must first review and acknowledge the Informed Consent form for the Study, which will be presented to you within the App.
We do not knowingly collect or solicit Personal Information from anyone under the age of 18 or knowingly allow such persons to register for the App without parental consent. If you are under 18, you must not attempt to register for the App and you must not send any information about yourself to us, including but not limited to your name, address, telephone number, or email address without parental consent. In the event that we learn that we have collected Personal Information from a person under age 18 without parental consent, we will delete that information. If you believe that we might have any information from or about a person under the age of 18, please contact us using the contact information below. Some Apps may study children and will include parental consent and, when appropriate, child assent. In such cases, the parent or legal guardian must be over the age of 18 to provide consent and to complete the all portions of the Study with their child, or report on their child.
Each App may obtain information from you in two ways. The first is information that you manually enter into the App (e.g., survey responses). The second is information that the App collects automatically about you from your device (e.g., phone or tablet) and/or wearable technology (e.g., wristwatch).The embedded Informed Consent for each App will tell you what items that specific App will be collecting. You may choose not to provide us with certain information. Some items automatically collected will be under your control and you may choose whether or not to provide this information by disabling/enabling this feature (e.g., GPS location information). Refusal to provide some items may exclude you from participation in the Study.
This App may also automatically receive technical information relating to your usage of the App such as your operating system, device, features used, content viewed and downloaded, the dates and times of your interactions with the App and other information. We may use this information to understand, customize and improve user experience with the App and the Study. For example, we may engage third-party analytics services to analyze this information in order to help us understand how visitors engage with and navigate the App, how and when features within the App are used and by how many users. Under no circumstance, however, will your health information be disclosed to such third-party analytics services.
“Push notifications” are messages that are sent to your smartdevice to remind you of what you need to do in the Study. The App will send you push notifications throughout your participation in the Study, to make sure that you know to do certain things as part of the Study.
All information that is collected through the App will be sent to a secure data server within Duke. Duke will replace the direct identifiers listed above (your name, email address, and date of birth) with a code to help protect your identity—Duke will encrypt the direct identifiers and store them separately. Because the data are coded, researchers using the data will not be able readily to identify which information pertains to you. Duke researchers will, however, maintain your consent and personal information and retain the ability to re-identify the information if doing so is needed for research integrity purposes or legal purposes, and they may share re-identified information with others at Duke who need to see such information to ensure that the research meets legal, regulatory or institutional requirements.
Access to the App on your smartdevice may be protected by a biometric authentication mechanism (such as Touch ID) or a passcode you select after downloading the app. One of these may need to be entered every time you access the App. You should take steps to prevent unauthorized access to your account and personal information by selecting and protecting your credentials appropriately and limiting access to your smartdevice.
We endeavor to protect the privacy of the Personal Information we hold in our records, but we cannot guarantee complete security. Unauthorized entry or use, hardware or software failure, and other factors, may compromise the security of your Personal Information at any time.
The App may contain links to external websites. We are not responsible for the privacy policies and/or practices on websites that may be accessed through these links. When following a link to another website, you should read that website’s privacy policy and make sure that you agree with it and can abide by it.
Please note that all information collected by the App will be processed in the United States regardless of your country of residence, and this may be done by another entity under contract with Duke. During the study, only Duke and contractors engaged by Duke will be able to compile data you generate or provide through or with the App.
It is recommended that you run a current operating system (OS) on your device, review the privacy/security settings often, and restrict any unnecessary access. Apps may run in the background of your device and may have unanticipated impact on the operations of your device (e.g., battery drainage). If you do not have an unlimited data/text plan, you may incur additional charges. At the conclusion of the study, you may wish to remove the App from your device.
We are not asking you to make any health decisions based on the use of the App. You should discuss health decisions directly with your healthcare provider.
The information collected by the App will not be shared with or sold for advertising purposes.
We reserve the right to disclose information collected through the App as required by law, when we believe disclosure is necessary to comply with a regulatory requirement, judicial proceeding, court order, or legal process served on us, or to protect the safety, rights, or property of Duke or the public.
Some Apps will ask for specific permission to share your information with outside parties. It is your choice whether to allow this sharing.
Through the App, you may access, and in some cases, edit or delete the following information you’ve provided to us:
When you update or delete information, however, we may maintain a copy of the unrevised information in our records to track the data entry into the Study and to assure the integrity of the Study. The information you can view and update may change as the App undergoes further development. Please note that any information that is automatically uploaded from the App (e.g., Location Information) cannot later be changed or updated. If you have any questions about viewing or updating information we have on file about you, please contact us using the contact information below.
You may choose not to install the App. If you choose not to install the App, you will be unable to participate in the Study.
You may stop all collection of information by the App at any time by withdrawing from the study on the profile page within the App or uninstalling the App. As explained further in each informed consent form, you will no longer be able to participate in the Study if you choose to uninstall the App. If you uninstall the App, we will retain all of information about you that was collected prior to that point and continue to use such information as described in this Privacy Policy. If you have questions about withdrawing, please contact the study team using the contact information within the app. When you withdraw from a study any data collected up to that point will be retained by the study team. If you wish to your study data deleted you will need to contact the study team using the contact information on the consent form or within the app. If a request to delete data is made we will do our best to remove your data from our systems.
You may be able to add, update, or delete certain information as explained above. When you update or delete information, we may maintain a copy of the unrevised information in our records.
We may use your Personal Information to contact you to ask if you would be willing to participate in additional research opportunities, including linking your App data with other health data, with your permission.
When you download the App, you receive a non-exclusive, non-transferable, non-assignable license (without the right to sublicense) to install and use one copy of the App solely for your personal, non-commercial use in connection with the Study. You must own or control the device on which you download the App. By downloading and using the App, you agree that you will not do anything to interfere with or disrupt the operation of the App, will provide only accurate and current information through the App, and will not impersonate anyone else in your use of the App. You further agree not to transmit content that you do not have the right to transmit or that infringes the rights of any party, and you agree to use the App in compliance with all applicable laws. You understand that the App or portions of it may be subject to patent, copyright, trademark and other intellectual property protection and that the ownership of software and other intellectual property related to the App, as well the goodwill associated therewith, remains with Duke or its licensors. You agree that any improvements or other changes to the App or the Study itself are the sole property of Duke.
This Privacy Policy is effective as of October 15, 2015. We may amend this Privacy Policy from time to time. New versions of this Privacy Policy are effective when they are posted to our website at the following link: https://privacy.researchkit.duke.edu. Use of information we collect now is subject to the version of the Privacy Policy in effect at the time such information is used.
If you have any questions or concerns regarding the topics addressed in this privacy policy, please send a message using the contact information below.
Duke and Duke Health are trademarks of Duke Health or its licensors.
Email: researchkitprivacy@duke.edu
Address:
Attention: ResearchKit Privacy Questions
Duke University Medical Center
DUMC Box 2713
Durham, NC 27705