Protecting your private information is our priority. This policy addresses how NICHQ collects, uses, protects or otherwise handles your personally identifiable information in accordance with the NICHQ public website (https://www.nichq.org), the NICHQ Collaboratory, and other online resources (together “NICHQ websites”). Personally identifiable information, as described in US privacy law and information security, is information that can be used on its own or with other information to identify, contact, or locate a single person, or to identify an individual in context. By using NICHQ websites, you consent to the data practices described in this statement.
Collection of Personally Identifiable Information
NICHQ may collect information from you when you subscribe to a mailing list, fill out a form, respond to a survey or enter information on the site. In these instances, you may be asked to provide your name, email address or other details. NICHQ encourages you to review the privacy statements of other websites that you choose to link to from NICHQ so that you can understand how those sites collect, use and share your information. NICHQ is not responsible for the privacy statements or other content on such websites not operated by NICHQ.
Use of Personally Identifiable Information
NICHQ may use the information collected from you to send periodic emails and newsletters, or to tailor the website’s content to improve your experience. NICHQ may also use your personally identifiable information to invite you to provide feedback via surveys or other mechanisms regarding your opinion of NICHQ services or your experience using the NICHQ website.
NICHQ does not sell, rent or lease its customer lists to third parties. NICHQ may share data with trusted partners to help perform statistical analysis, send you email or postal mail or provide customer support. All such third parties are prohibited from using your personal information except to provide these services to NICHQ, and they are required to maintain the confidentiality of your information.
NICHQ may keep track of the pages and files that visitors access within the NICHQ website to determine which services and information are most popular. These data are used to deliver customized content within the NICHQ website to customers whose behavior indicates that they are interested in a particular subject area.
NICHQ may disclose your personally identifiable information, without notice, only if required to do so by law or in the good faith belief that such action is necessary to: (a) conform to the edicts of the law or comply with legal process served on NICHQ or the website; (b) protect and defend the rights or property of NICHQ; and, (c) act under exigent circumstances to protect the personal safety of users of the NICHQ website, or the public.
Automatically Collected Information
Information about your computer hardware and software may be automatically collected by NICHQ. This information can include: your IP address, browser type, domain names, access times and referring website addresses. This information provides general statistics regarding the use of the NICHQ website, and is used to maintain its operation and quality.
The NICHQ website may use “cookies” to understand visitors’ preferences and interests so that NICHQ can better personalize their online experience. A cookie is a text file that is placed on your hard disk by a web server. Cookies cannot be used to run programs or deliver viruses to your computer. They are uniquely assigned to you, and can only be read by a web server in the domain that issued them to you. The purpose of a cookie is to tell the web server that you have returned to a specific page, to help recall your specific information on subsequent visits.
Most web browsers automatically accept cookies, but you can modify your browser setting to decline cookies if you prefer. If you choose to decline cookies, you may not be able to fully experience the interactive features of the NICHQ website.
NICHQ Collaboratory User Information
NICHQ will not release any personally identifying information from the CoLab regarding our users (e.g., email addresses, names, organizational affiliation) without their explicit permission. In addition, any information on user activity that we might share on the NICHQ website or elsewhere outside of the CoLab will be de-identified and aggregated.
Children Under Thirteen
NICHQ does not knowingly collect personally identifiable information from children under the age of thirteen. If you are under the age of thirteen, you must ask your parent or guardian for permission to use the NICHQ website.
CANSPAM Act and Opt-Out/Unsubscribe
In accordance with the CANSPAM Act, NICHQ agrees to the following: (1) not to use false or misleading subjects or email addresses; (2) identify the message as an advertisement in some reasonable way; (3) include the physical address of the NICHQ headquarters; (4) monitor third-party email marketing services for compliance, if one is used; (5) honor opt-out/unsubscribe requests quickly; and (6) allow users to unsubscribe by using the link at the bottom of each email.
NICHQ respects your privacy and gives you an opportunity to opt-out of receiving announcements, newsletters or other communications. If at any time you would like to unsubscribe from receiving future emails, you can follow the instructions at the bottom of any communication or contact firstname.lastname@example.org and we will promptly remove you from ALL correspondence.
Fair Information Practices
NICHQ will notify you via email within three (3) business days should a data breach occur. NICHQ also agrees to the Individual Redress Principle, which stipulates that individuals have the right to legally pursue enforceable rights against data collectors and processors who fail to adhere to the law. This principle requires not only that individuals have enforceable rights against data users, but also that individuals have recourse to courts or government agencies to investigate and/or prosecute non-compliance by data processors.
Information Access, Correction, and Deletion
You may contact us to request access to the information we have related to you. In order to comply with your request, we may ask you to verify your identity. We will fulfill your request electronically. If you believe that the information we have about you is incorrect, you are welcome to contact us so that we can update it and keep your data accurate. Any data that is no longer needed for the purposes described in the "Use of Personally Identifiable Information" or "NICHQ Collaboratory User Information" sections, above, will be deleted. If at any point you wish NICHQ to delete information about you, please contact us.
If you are a subscriber to one of NICHQ's mailing lists, you may edit your communication preferences by clicking the "email preferences" link in the footer of any NICHQ newsletter or project email that you receive. Alternatively, you may contact us directly to request access to the personal data that we have about you (e.g., your name, email address), which we will supply electronically, or to request that we modify or delete that information.
NICHQ may occasionally update this statement, so you are encouraged to periodically review the policy to remain informed of how NICHQ is protecting your information.
National Institute for Children’s Health Quality
308 Congress Street, 5th Floor
Boston, Massachusetts 02210
Phone: (617) 391-2700
Updated November 8, 2019