- Board of Governors
- Methodology Committee
- Authorizing Law
Last Updated: March 14, 2023
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 federal law to fund research designed to help patients and those who care for them make better-informed healthcare decisions. Our core community includes patients, caregivers, health researchers, clinicians, insurers, employers, hospitals and health systems, policy makers, industry, and groups representing these constituents.
Personal Information We Collect
We may collect the following categories of Personal Information from you:
- Contact and demographic information, such as name, date of birth, age, home address, phone number, email address, disabilities and special needs, sexual orientation, gender identity, emergency contact information, race and ethnicity;
- Account information, such as username and password;
- Financial and tax information, such as bank account information and tax identifiers;
- Professional information, such as business email address and physical address, title, department, position, professional qualifications, highest level of education, affiliated institution, stakeholder community, employment history;
- Social media account information, such as your social media account handle, accounts you follow, and when you interact with our pages on those platforms;
- Communications that we exchange with you, including when you contact us with questions, feedback or otherwise, provide us with survey responses or descriptions of your lived experiences, and post messages on our sites;
- Communication preferences, such as whether you have signed up for one of our newsletters; and
- Award or fellowship information, such as applications, progress reports, results, and disbursement of funds.
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.
When you provide information on our sites, we ask that you do not include sensitive information, unless we request it, which we do when we need it for a specific purpose (such as for processing applications).
We collect Personal Information automatically when you (or other users) visit our sites through the use of “cookies” and other similar electronic tracking methods, such as pixels and UTM codes. Personal information collected includes:
- 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.
For example, we use Google Analytics cookies and similar technologies to analyze how visitors use our sites, to compile reports on website activity, and to provide us with related information and services. Google may transfer information to third parties that process it on its behalf or to other third parties when required by law. You can read more about how Google protects your information here: https://support.google.com/analytics/answer/6004245?hl=en.
We, like many website operators, also permit third parties, such as online advertising networks, to collect information similar to what Google collects from our sites for use in behavioral advertising on third party websites. Third parties operating on our sites may also collect Personal Information over time and across third party websites following your visit to our sites. In certain circumstances, third parties’ use of information collected from our sites in exchange for services may constitute “sales” under applicable data protection laws. You can opt out of this collection and use of information by following the instructions provided in the Your Rights and Choices section below.
We also may use web beacons from third parties to help us compile statistics about the operations of our sites. Please note, 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, such as government institutions, social media platforms (when you visit our pages on those platforms), and research institutions, and combine it with the information about you that we have collected from our sites.
How We Use the Personal Information We Collect
We use the Personal Information we collect to:
- Use for our operational and business purposes, including pre- and post-award processes; evaluation and improvement of our funding decisions; and data analysis;
- Plan, organize, and manage our events and related travel;
- Operate, troubleshoot, or improve our sites;
- Personalize your experience on our sites and understand how you interact with our sites;
- Respond to your inquiries;
- Send you newsletters, surveys, updates, marketing communications, and other information or materials that may interest you;
- Assess the effectiveness of our awards, events, promotional campaigns, and publications;
- Maintain our list of contacts;
- Deliver advertisements on third party websites following your visit to our sites and for other similar purposes, known as targeted advertising;
- Evaluate, recruit, and hire personnel;
- Comply with our legal obligations;
- Detecting, preventing, and responding to actual or potential fraud, illegal activities, or intellectual property infringement;
- Respond to legal process or requests for information issued by government authorities or other third parties; or
- Protect your, our, or others’ rights.
We reserve the right to use de-identified or aggregate data for any purpose without limitation, and we will not attempt to re-identify the information.
Personal Information We Share
We may disclose Personal Information we collect with the following categories of third parties for the purposes described in the “How we use information we collect” section:
- To service providers, contractors, and partners to enable the fulfillment of our mission and operations and to perform other functions on our behalf;
- To law enforcement, government agencies, courts, or other third parties to protect ourselves, our employees, or others, to investigate fraud, or as required by law, such as to comply with a subpoena or similar legal process; and
- To third parties, in the unlikely event PCORI changes its corporate form or winds down its operations (in which case your Personal Information will be subject to the policies of the receiving organization).
We may disclose Personal Information we collect to any other third party, with your prior consent. We may disclose de-identified or aggregated information with partners and service providers. 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.
Information You Choose to Disclose Publicly
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 implement technical and organizational measures designed to ensure a level of security appropriate to the risk to the personal data we process. These measures are aimed at ensuring the ongoing integrity and confidentiality of 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
Your Rights and Choices
Depending on where you reside, you may have the following rights with respect to your Personal Information that we process (i.e., any operations performed on personal data, such as the collection, use, storage, disclosure, analysis, deletion, or modification of personal data), subject to applicable exceptions:
- Access: You may request that we confirm whether we process your Personal Information and that we provide you access to such Personal Information.
- Data Portability: You may request that information provided in response to an Access request be in a portable and, to the extent technically feasible, readily usable format.
- Correction: You may request that we correct inaccuracies in the Personal Information that we process.
- Deletion: You may request deletion of your Personal Information.
- Opt Out: You may request that we not process your Personal Information for the purposes of targeted advertising or sales, as those terms are defined by relevant state law.
- Exercising Your Rights: You may submit requests to exercise your rights by contacting us at [email protected]. You can appeal a refusal to take action on your request by contacting us at [email protected].
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:
Attn: Director of Communications
Patient-Centered Outcomes Research Institute (PCORI)
1333 New Hampshire Avenue, NW, Suite 1200
Washington, DC 20036