Last Updated: May 2018
At the Patient-Centered Outcomes Research Institute (PCORI), your privacy is important to us, and we know it is important to you. So we’ve developed this policy to help you understand what kind of information about you that we collect, why we collect it, and what we do with it.
PCORI is an independent, nonprofit organization authorized by Congress to fund research designed to help patients and those who care for them make better-informed healthcare decisions. Our core audience includes patients, caregivers, health researchers, clinicians, insurers, employers, hospitals and health systems, policy makers, industry, and groups representing these constituents.
This policy applies to information we collect through our sites, including information that personally identifies you (“Personal Information”) and other information we collect about you that does not itself identify you (such as anonymous, pseudonymous, aggregated, or certain device or computer level data). This policy does not apply to information we collect offline, such as by telephone or in person, although that information may be protected by other policies, or combined with the information we collect online.
We hope you will take time to read this policy carefully. We may update this policy from time to time, so please check back frequently as your use of our sites constitutes your acceptance of this policy.
Information we collect
Depending on which sites you visit, or the applications or services you use, we collect different kinds of information from or about you. For example, we may collect Personal Information about you, i.e., information that identifies you, such as your name, address and e-mail address, when you provide it to us voluntarily. Here are more details on the kinds of information we collect, and why, when you visit or use our sites:
- Information you provide us when you create an account;
- Information you provide us when you apply for a job, including professional qualifications via a resume or otherwise, and employment history;
- Information you provide when you apply for a procurement contract;
- Information you provide us when you participate in message boards or forums, sign up to receive electronic newsletters, participate in polls and surveys, or otherwise contact us with a question, comment, or request;
- Information we collect to protect the security of our sites, as well as the security of our visitors and users;
- Information we collect related to your use of our sites;
- Information our vendors and partners collect related to your use of our sites;
- Information you provide in relation to award funding or a fellowship we provide or administer, including applications, progress reports, results, and disbursement of funds.
When you provide information to our sites, we ask that you do not include sensitive information, such as Social Security numbers, driver’s license numbers, dates of birth, and payment card information or other financial information, unless we request it, which we do when we need it for a specific purpose.
We may also collect other information about or relating to you (or other users of your computer or mobile device) automatically when you (or other users) visit our sites through the use of “cookies” and other similar electronic tracking methods. The information we automatically collect may include information such as your website domain name; the Internet address of the site from which you came; the date and time of your access; your computer’s IP address and information about its operating system, browser and host; the date and time you accessed our sites; the individual pages you visit within our sites; or the individual pages you visited prior to or after visiting our sites. We also may use web beacons from third parties to help us compile statistics about the operations of our sites.
Third parties operating on our sites may collect information over time and across third party websites following your visit to our sites. Our sites do not currently respond to Do Not Track (DNT) signals from browsers.
We also may collect information about you from third party sources and combine it with the information about you that we have collected from our sites.
How we use information we collect
We use the information we collect to process your requests and for related activities in support of our mission and operations. We also use this information to better understand how visitors use our sites, research our visitors' demographics, interests, and behavior, provide visitors with customized services and information, improve our promotional and outreach efforts, to deliver advertisements on third party websites following your visit to our sites and for other similar purposes. We may also use your Personal Information to contact you, through e-mail, telephone, postal mail, and text messaging (where you provide your cell phone number as a contact). When we contact you, we may send you information about us and our partners, and to increase public awareness.
You may visit portions of our sites without providing us your name, email address, or other Personal Information. You may, however, be required to provide certain Personal Information to access certain features of our sites. For example, visitors looking to receive updates via email about developments relating to our funded research projects would need to provide their email address.
Information we share
We do not sell the Personal Information you provide through our sites. However, we may disclose Personal Information about you to third parties in various circumstances such as in the circumstances described below, or as otherwise disclosed in this policy:
- With your consent;
- As we believe necessary to: (i) comply with law (including court and government orders, and civil subpoenas); or (ii) protect the rights, property, or safety of PCORI (including its officers, directors, employees, volunteers, and agents), our customers or users, or others;
- As we believe necessary or appropriate to inform and cooperate with law enforcement agencies or other governmental authorities and regulators, regardless of the presence of specific legal process;
- With our partners, vendors, and successors (see also the successor entities or operations section below); or
- In de-identified, anonymous, or pseudonymous form, or in an aggregated form—i.e., information about multiple users collectively without identifying any individual user—such as the total number of visitors to a particular section in a given week. We typically use this information for research, statistical or site improvement purposes, e.g., to measure the number of visitors to our sites and its various sections and to help make our sites more useful to visitors.
We may also share your Personal Information and other information about you with our partners and vendors to enable the fulfillment of our mission and operations and perform other functions on our behalf, such as: (i) providing technical and hosting functions for our sites, (ii) managing our databases, (iii) sending postal mail, e-mail, or text messages, (iv) analyzing data, (v) and providing customer service. These partners and vendors may have access to and use your information as needed to perform their functions, but they are contractually obligated to provide reasonable security and confidentiality safeguards, subject to exceptions, such as disclosures required to be made by law.
Information you share in public comments or forums
Some of our sites let you share information with others. Remember that when you share information publicly, it may be indexable by search engines, such as Google, Bing, and others. Even in subscription forums, information viewable by others may be taken by them and further disseminated. If you choose to provide Personal Information in any of our groups, publicly available forums such as blogs, or during our collection of public comments on an issue, you should be aware that you have no basis for an expectation of privacy in such information. Those comments—including, but not limited to, any documents or other materials and any identifying information submitted with your comments—may be posted by us on our sites, elsewhere on the Internet, in any other public forum, or in other PCORI materials. When providing public comments, you should provide only your own Personal Information or Personal Information about those who have granted explicit consent for you to share the specific information you are sharing.
Storing personal information
We use reasonable measures to protect your Personal Information. However, due to the nature of the Internet, we cannot guarantee the security of that information.
Children’s personal information
Our sites are not directed towards children under 13 and we do not solicit or knowingly collect Personal Information from children under 13.
Third-party websites and jointly offered websites or services
Successor entities or operations
If PCORI ceases to exist or is absorbed by, merges with, or becomes a new entity (e.g., through legislation transferring our mission to another entity), we may share your Personal Information with that entity or as otherwise directed by law or government authorities, in which case your Personal Information will be subject to the policies of the receiving organization.
If you have any questions or comments about this policy or our treatment of Personal Information, or if you would like to stop receiving messages from us, you can e-mail us at [email protected] or write to us at 1333 New Hampshire Avenue NW, Suite 1200, Washington, DC 20036.
What's Happening at PCORI?
The Patient-Centered Outcomes Research Institute sends weekly emails about opportunities to apply for funding, newly funded research studies and engagement projects, results of our funded research, webinars, and other new information posted on our site.