Last updated: March 11, 2024


At the International Consortium of Health Outcomes Measurement (“ICHOM”), we are committed to protecting and respecting your privacy.

This ICHOM Connect Privacy Policy (“Policy”) outlines what data we collect about people who use our ICHOM Connect website at (the “Website”).  The Policy describes how we use your data, with whom we share it, and how we keep it secure. ICHOM is the data controller and our registered office is located at 399 Boylston St. 6th floor, Boston MA, 02116, United States of America.  For details regarding the data we collect on our ICHOM website, please visit

By using the Website, you’re agreeing to be bound by this Policy. If you have any questions relating to this Policy, please contact us at:

What data do we collect?

Information You Provide Us

When you sign up for the Website, we may request your name, postal address, email address, and professional or employment related information such as your employer and job title, as part of the registration process.  We may also ask you to create a user name and password, or we may permit you to login through a third party application (your user name, password for us or for third party application, “Login Credentials.”)

If you purchase a product from us, your card information is not collected or stored by us; it is collected by our third party payment processor, Stripe, who specialize in the secure online capture and processing of credit/debit card transactions.

When using the Website, you may add information as part of your profile, including your personal website, X account, LinkedIn account, photo, professional employment related information (for example, specialization or areas of interest).  We also collect the content, communications and other information you provide when you use the Website, for example, when you create or share content, and message or communicate with others.

Data with special protections: You can choose to provide information on the Website about your religious views, political views, or your health. This and other information (such as racial or ethnic origin, philosophical beliefs or trade union membership) could be subject to special protections under the laws of your country.  We ask that you do not provide information on the Website about other individuals, including, for example, healthcare or treatment information of any patient or other individual.

Other Data

When you use, access, or interact with the Website, ICHOM and its service providers automatically collect certain data about you and your computer, smartphone, or other device. This may include such data as your IP address and domain name, the pages you visit on the Website, the date and time of your visit, the files that you download, the URLs from the websites you visit before and after navigating to the Website, your software and hardware attributes (including device IDs), your general geographic location (e.g., your city, state, or metropolitan region), and certain cookie information (see below). To obtain such information, we may use web logs or applications that recognize your computer and gather information about its online activity.

The Website or the emails that you receive from ICHOM may also use an application known as a “pixel tag” (also known as a “web beacon” or “web bug”). A pixel tag is an electronic file that usually consists of a single-pixel image. It can be embedded in a web page or in an email to transmit information, which could include personal data. For example, it can allow an email sender to determine whether a user has opened a particular email.

When you receive an email communication you have actively consented to receive, we use a pixel tag to help us track the performance of each email campaign. This helps to build a picture of how many people opened each email and the most popular aspects of the newsletter. We use this information to improve campaigns, so they are more relevant and engaging in the future. This performance data is also helpful in identifying any users who do not open our emails and to proactively contact them to ask if they wish to opt out or unsubscribe, so that we do not hold any unnecessary data.

The Website also uses cookies, which are small text files stored on your computer or device. A cookie allows the Website to recognize whether you have visited before and may store your preferences and other information.  Below are the different ways in which we use cookies:

Remembering who you are

We ask for permission for the Website to remember that you are logged in to the Website on a particular device, so you do not have to log in every time you visit our Website. When you first log in to the Website you will be presented with the option of whether you would like the Website to remember your log-in details and keep you logged in.

Web analytics

We use cookies to analyze how our visitors’ use the Website and to monitor website performance. This data gives us an insight into the relevancy and use of individual web pages, as well as giving an overview of where our traffic has come from and the search terms used to find our content via search engines.


We use cookies for advertising purposes as described below in the section titled “Analytics and Interest based advertising.”

Turning off cookies

If you do not wish for the Website to set cookies on the devices you use to access the Website, you can switch this option off in your browser preferences. For more information about turning off cookies, please visit: Please note: turning off cookies may result in a poorer user experience and some features may stop working.

The Website currently does not respond to “do-not-track” browser headers.

How do we use your data? 

We use the data you provide and the other data we automatically collect when you visit the Website to provide you with newsletters to which you have subscribed and access to certain of our Sets of Patient-Centered Outcome Measures from time to time, to send you information that may be of interest to you, and to respond to your inquiries if you contact us through the Website. We may also use your data to deliver confirmations, account information, notifications, and similar operational communications; to improve your user experience and the quality of the Website; to engage in analytics and research concerning the Website; to tailor advertisements to you; to comply with legal and/or regulatory requirements; and to manage our business.


Our Website is not directed to children under the age of 18, and we do not knowingly collect personal data from children under the age of 18.

Where is your data stored? 

We store your personal data (from newsletter and Patient-Centered Outcome Measures updates subscriptions and event and conference registrations and the Website) in our Customer Relationship Management (“CRM”) database, which is maintained in the United Kingdom.

Who has access to your data at ICHOM?

Except as provided below in “With whom do we share your data”, only authorized personnel within ICHOM have access to our CRM database which holds your data. These individuals have password protected access to the database in order to deliver the services you have requested from us.

With whom do we share your data?

We do not sell, rent or share any of your personal data with external organizations for their own purposes, except as provided in this Privacy Policy.

Occasionally, some of our communications will include information about our collaborations with third parties, however, ICHOM does not share your personal data with the third parties and ICHOM maintains full editorial control over the content we send you.

We may, however, share your data for the purposes described below:

ICHOM Connect Members and Subscribers

Your data such as your profile details and the content you post on the Website may be accessed by other members on the Website.  Members have the option to make certain details and posts private or to decline to provide certain information altogether.

Third-party service providers

ICHOM uses third-party service providers that perform services on our behalf, including web- hosting companies, CRM database providers, payment processors, email vendors, and analytics providers. These service providers may collect and/or use your data, including information that identifies you personally, to assist us in achieving the purposes discussed above.

Legal purposes

We also may use or share your information with third parties when we believe, in our sole discretion, that doing so is necessary:

  • to comply with applicable law or a court order, subpoena, or other legal process;
  • to investigate, prevent, or take action regarding illegal activities, suspected fraud, violations of our terms and conditions, or situations involving threats to our property or the property or physical safety of any person or third party;
  • to establish, protect, or exercise our legal rights or defend against legal claims; or
  • to facilitate the financing, securitization, insuring, sale, assignment, bankruptcy, or other disposal of all or part of our business or

Aggregated information

From time to time, ICHOM may also share aggregated information about Website users, such as by publishing a report on trends in the usage of the Website. Such aggregated information will not identify you personally.

Analytics and Interest-based advertising

We partner with certain third parties to obtain the automatically collected other data discussed above and to engage in analysis, auditing, research, and reporting. These third parties may use web logs or web beacons, and they may set and access cookies on your computer or other device. In particular, the Website uses Google Analytics to help collect and analyze certain information for the purposes discussed above. You may opt out of the use of cookies by Google Analytics here.

We also partner with third parties to provide advertising services that are targeted based on your online activities across websites and devices over time (commonly referred to as “interest-based advertising”).  Our advertising partners may collect information about your activities on the Website on your current device and combine it with information about your activities on other websites and devices.  They may collect such information using server logs, cookies, web beacons, tags, pixels, mobile advertising IDs (such as Apple’s IDFA or Google’s Advertising ID), cross-device linking, and similar technologies.  For example, our advertising partners may use the fact that you visited the Website to target advertising to you on other websites on your current device or on other devices you use.  They may match your browsers or devices if you log into the same online service on multiple devices or if your devices share similar attributes that support an inference that they are used by the same person or household. This means that information about your activity on websites on your current browser or device may be combined and used with information collected from your other browsers or devices.

For more information about interest-based advertising, please visit in the EU, or the Network Advertising Initiative website and the Digital Advertising Alliance website in the US.  You may opt out of interest-based advertising in web browsers on your current browser or device by following the instructions below.

To opt out in web browsers, please visit and  To help preserve the choices that you make in the Digital Advertising Alliance’s WebChoices page, you can install the Digital Advertising Alliance’s “Protect My Choices” extension that is available at

Please note that the opt-outs described above will apply only to the specific browser or device from which you opt out, and therefore you will need to opt out separately on all of your browsers and devices.  If you delete or reset your cookies or mobile advertising identifiers, change browsers (including upgrading certain browsers), or use a different device, any opt-out cookie or tool may no longer work, and you will need to opt out again.

Data transfer

The data we collect from you in connection with the Website may be transferred to and stored at a destination outside the EU in a country that may not have the same level of data protection laws as in your country. As well as the US, ICHOM has offices in the UK, so it may be necessary to deliver some of the services you have consented to receive outside the EU by authorized personnel. By submitting your personal data, you’re agreeing to this transfer, storing or processing. If we transfer your information outside of the EU in this way, we will take steps to ensure that appropriate security measures are taken with the aim of ensuring that your privacy rights continue to be protected as outlined in this Policy. For more information about how we safeguard your personal data, contact us at

Lawful Bases for Processing

We only collect and process personal data where we have a lawful basis. Lawful bases include consent (where you have given consent), performance of a contract (where you have entered into a contract with us) legal obligation (where processing is necessary to comply with the law), or our legitimate interests (e.g., to protect us or you, to comply with applicable laws, or to administer and improve our business).

Where our processing of personal information is based on consent, you have the right to withdraw your consent at any time, and where we rely on legitimate interests, you have the right to object.

To initiate a request to object or withdraw your consent, please contact


You may opt out of receiving marketing emails from us by following the instructions in those emails or by emailing us at

Accessing and requesting your data

You have the right to access, review, update, correct, or delete the personal information held about you. In some circumstances you may also have the right to restrict or object to processing and to receive your personal information in a portable form. To initiate a request, please contact or visit the preference centre under your profile settings.

You may also have the right to lodge a complaint with a supervisory authority in the EU.

Data Retention 

We retain your personal data for as long as reasonably necessary to provide the Website, newsletters, Sets of Patient-Centered Outcome Measures, or event or conference information to you, or as otherwise required by applicable law. Due to inactivity, we may contact you to see if you still wish us to hold your data or if we should delete it.

Links to external websites and third parties

The Website includes links to external websites that may provide further information. Any link we include does not imply endorsement or approval by us of the linked website, its operator or content. Once you click on a link to another website, you are bound by that website’s privacy policy, and not this Policy. ICHOM accepts no responsibility for any loss or damages that may arise from your use of any other website.

Data Security

We employ physical, technical, and organizational measures to safeguard the personal data we collect online. However, no website is 100% secure, and we cannot ensure or warrant the security of any information you transmit to the Website or to us, and you transmit such information at your own risk.

Changes to our terms and conditions and services

If we update our terms and conditions, privacy policy or the services we provide, we will make you aware of these changes by posting the updates to our site and notifying you as appropriate.

Your feedback

We welcome feedback on our Privacy Policy. Please send us any comments to

Review and update of this Policy

This Policy is regularly reviewed and was last updated on March 11, 2024.


©2024 ICHOM | ©2024 ICHOM Sets of Patient Centered Outcome Measures are made available under copyright by ICHOM. They may not be used in commercial contexts without the prior written permission of ICHOM


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