Privacy Policy

Last modified: June 29, 2023

Introduction

Seattle Children’s Hospital d.b.a. Seattle Children’s Research Institute (“Seattle Children’s” or “we,” “our,” or “us”) respects your privacy, and we are committed to protecting it through our compliance with this policy.

This Privacy Policy (our “Privacy Policy”) describes the types of information we may collect from you or that you may provide when you use the Seattle Children’s Hospital REACH Study Website (the “REACH Website”) and when we communicate with you about your use of the REACH Website, and our practices for collecting, using, maintaining, protecting, and disclosing that information.

The REACH Website is available to research participants for use in an IRB-approved study, STUDY0000342, “Randomized controlled trial of an internet-based prevention intervention for parents with irritable bowel syndrome (REACH)” (“REACH Study”). The purpose of the REACH Study is to investigate how parents with IBS can help their young children develop healthy habits. The terms in this Privacy Policy apply to the types of information collected through the REACH Website and our communications with you about the REACH Website. In connection with the REACH Study, you will or may have already signed an Informed Consent Form. In the event of a conflict between the terms of this Privacy Policy and the terms of the Informed Consent Form, the Informed Consent Form terms shall prevail. 

This policy only applies to information we collect through the REACH Website or communications with you about the REACH Website. It does not apply to information collected by:

• Seattle Children’s offline or through any other means outside of or apart from the REACH Website or our communications with you about the REACH Website, including on any other applications or websites operated by Seattle Children’s or any third party; 
• any third party. 

Please read this policy carefully to understand our policies and practices regarding your information and how we will treat it. If you do not agree with our policies and practices, your choice is not to use our REACH Website. By accessing or using our REACH Website, you agree to this Privacy Policy.

Children Under the Age of 18

This REACH Website is not intended for use by anyone under the age of 18 years old. Parents must be over the age of 18 to participate in the REACH Study. The REACH Website will not collect information about your child. If you believe we may have collected information from a child without parental consent, please contact us at PPSI@seattlechildrens.org.   

Information We Collect About You and How We Collect It

When you use our REACH Website or communicate with us about your use of the REACH Website, we may collect certain limited information by which you may be personally identified or that is about you individually, such as information about your activity on the REACH Website (collectively, “Personal Data”). 

This includes information that we collect directly from you or through automated collection technologies. Specifically, we may collect your name and email address directly from you when you provide it to us. Additionally, as you navigate through and interact with our REACH Website, we may use automatic data collection technologies to collect information about your connection date and time and progress throughout the REACH Website, as further described below. 

We collect certain usage data, such as data regarding your interactions within the REACH Website, including when you first create an account and each time that you log in, log out, and enter or exit a page; however, we track this information using a unique identifier that does not personally identify you. 

We may use third party service providers to make the REACH Website available to you and to track your activity on the REACH Website. This usage data is used by the service provider for purposes that support the REACH Study and will not contain your name.   

How We Use Your Information

We use information that we collect about you or that you provide to us, including any Personal Data:

• to present our REACH Website and its contents and services to you;
• to understand your usage patterns including which materials you accessed online and when;
• to improve our REACH Website, and to help develop new websites, applications, or procedures; and 
• as set forth in the Informed Consent Form.

All matters relating to the REACH Website shall be governed by and construed in accordance with the internal laws of the State of Washington without giving effect to any choice or conflict of law provision or rule (whether of the State of Washington or any other jurisdiction).

Some information Seattle Children’s collects constitutes protected health information (“PHI”) under the U.S. Health Insurance Portability and Accountability Act (“HIPAA”) and Washington State law. Seattle Children’s will use and disclose PHI only as permitted under HIPAA. 

Disclosure of Your Information

We do not share, sell, or otherwise disclose your Personal Data for purposes other than those outlined in this Privacy Policy or as set forth in the Informed Consent Form. However, we may disclose information about our users that has been combined to result in de-identified information. 

We may disclose Personal Data that we collect or you provide as described in this Privacy Policy:

• to investigators at the University of Washington who are collaborating on the REACH Study; 
• to a buyer or other successor in the event of a merger, divestiture, restructuring, reorganization, dissolution, or other sale or transfer of some or all of our assets, whether as a going concern or as part of bankruptcy, liquidation, or similar proceeding, in which Personal Data held by Seattle Children’s about our REACH Website users are among the assets transferred; 
• to comply with our legal obligations; and
• with your consent.

We may also disclose your Personal Data if we believe disclosure is necessary or appropriate to protect the rights or safety of our patients. 

Choices About How We Use and Disclose Your Information

During the REACH Study, we will collect Personal Data through the REACH Website and communications with you about the REACH Website, which will be used for the purpose of the REACH Study as described in the Informed Consent Form and may help develop new websites, applications,  or procedures. 

With respect to any PHI Seattle Children’s may obtain, you have certain rights under HIPAA to access your data, to restrict use and disclosure of it, to request communication methods, to request corrections to your data, to receive an accounting of disclosures and to receive notice of any breach. 

You also have the right to withdraw your consent to the processing of your Personal Data at any time. However, if you withdraw your consent to the processing of your Personal Data after you have started your participation in the REACH Study this will result in your withdrawal from the REACH Study. You have certain rights to access your data, to restrict use and disclosure of it, to request communication methods, to request corrections to your data, to receive an accounting of disclosures and to receive notice of any breach; however, certain Personal Data collected before you make such a request may need to be processed by Seattle Children’s to comply with regulations governing clinical research in the United States and cannot, therefore, be erased. 

If you have any questions about the collection and use of information about you or would like to exercise rights that you may have regarding this information, please contact us at PPSI@seattlechildrens.org for more information or to request any of the above, or via email at privacy.questions@seattlechildrens.org for information about HIPAA rights, to exercise any of your privacy rights, or to offer concerns, complaints or suggestions.

Data Security

We have implemented measures designed to secure your Personal Data from accidental loss and from unauthorized access, use, alteration, and disclosure. We use encryption technology for information sent and received by us through the REACH Website. 

The safety and security of your information also depends on you. If we have provided a user name and password or you have chosen a password for the use of our REACH Website, you are responsible for keeping the user name and password confidential. Please do not share your user name and password with anyone. 

Unfortunately, the transmission of information via the Internet and through electronic communications is not completely secure. Although we work diligently to try and protect your Personal Data, we cannot guarantee the security of your Personal Data transmitted to our REACH Website or in electronic communications about your use of the REACH Website. Any transmission of Personal Data is at your own risk. We are not responsible for circumvention of any privacy settings or security measures contained on the REACH Website or in your operating system.

Changes to Our Privacy Policy

We may occasionally make additions, updates, or other changes to this Privacy Policy during the REACH Study. We will post any updated version(s) of this Privacy Policy on the REACH Website and they will be effective upon posting. By continuing to use the REACH Website, you agree to any updated version(s) of this Privacy Policy.

Contact Information

You may contact us through the contact information below. 

If you have any questions, concerns, complaints or suggestions regarding our Privacy Policy, you may contact us at via email at PPSI@seattlechildrens.org, or via email at privacy.questions@seattlechildrens.org for information about HIPAA rights, to exercise any of your privacy rights, or to offer concerns, complaints or suggestions. 

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