At the International Consortium of Health Outcomes Measurement (ICHOM), we are committed to protecting and respecting your privacy. We will only use your personal data to administer your account and provide you with any products and services you have requested from us. 

This Privacy Policy (Policy) outlines what data we collect about people who use our website (ICHOM.org) (the Site), how we use it, with whom we share it, and how we keep it secure. This policy has been updated in order to comply with the EU’s General Data Protection Regulation, which is valid from 25 May 2018. ICHOM is the data controller and our registered office is located at Hamilton House, 4 Mabledon Place, Bloomsbury, London, WC1 9BB, United Kingdom.

By using our Site, you’re agreeing to be bound by this Policy.  If you have any questions relating to this Policy, please contact: m.hulslander@ichom.org

What data do we collect?

Newsletter and Standard Set subscriptions

You can visit the Site without submitting any data that we can use to identify you personally.  However, if you use certain features on the Site, such as the “Contact Us” feature, or if you subscribe to receive newsletters or updates about our Standard Sets (by medical condition or disease area), we will ask you to provide identifying data, including your name, email address, country, organization, and job title. In order to subscribe to our Standard Sets, you must create an account and provide a username and password.

Occasionally, we may tailor the newsletter you receive so it is relevant to your location or job title.

You are not required to provide your personal data, but you will be unable to receive newsletters or Standard Sets if you do not.


On ICHOM.org, there is an option to donate to ICHOM (https://www.ichom.org/support-ichom/ ) If you make a donation online or purchase a product from us, your card information is not collected or stored by us, it is collected by our third party payment processors, Stripe, who specialize in the secure online capture and processing of credit/debit card transactions, and who are GDPR compliant.

Other Data

When you visit the Site, ICHOM automatically collects certain data about you and your computer, smartphone, or other device when you use, access, or interact with our Site. This may include such data as your IP address and domain name, the pages you visit on the Site, 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 Site, 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 Site 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.

The Site also uses cookies, which are small text files stored on your computer or device.  A cookie allows the Site 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, web logs, and pixel tags:

Remembering who you are

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

Web analytics

We use cookies to analyze how our visitors’ use our 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.

ICHOM newsletters and Standard Set updates

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 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.

Turning off cookies

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

The Site 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 visit the Site to provide you with newsletters and access to Standard Sets to which you have subscribed, to process your donations and to respond to your inquiries if you contact us through the Site.  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 our Site; to engage in analytics and research concerning the Site; to comply with legal and/or regulatory requirements; and to manage our business.


Our Site is not directed to children under the age of 13, and we do not knowingly collect personal data from children under the age of 13.

Where is your data stored?

We store your personal data (from newsletter and Standard Set updates subscriptions) in our Customer Relationship Management (CRM) database, which is maintained in the United Kingdom.

Who has access to your data at ICHOM?

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 partnerships with third parties, however, ICHOM maintains full editorial control over the content we send you.

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


We partner with certain third parties to obtain the automatically collected 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 Site uses Google Analyticsto help collect and analyze certain information for the purposes discussed above.  You may opt out of the use of cookies by Google Analytics here.

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 assets.

Aggregated information

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

Data transfer

The data we collect from you in connection with the Site 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 UK, ICHOM has offices in the US and Mexico, 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 m.hulslander@ichom.org

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), legal obligation (where processing is necessary to comply with the law), and our legitimate interests (e.g., to protect us and you, to comply with applicable laws, and 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 m.hulslander@ichom.org


You may opt out of receiving marketing emails from us by following the instructions in those emails or by emailing us at m.hulslander@ichom.org.

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 m.hulslander@ichom.org


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 Site, newsletters, and Standard Set subscriptions to you, or as otherwise required by 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

Our Site 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 them.

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 Site 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 send you an email notification to make you aware of these changes.

Your feedback

We welcome feedback on our Privacy Policy. Please send us any comments to m.hulslander@ichom.org

Review and update of this Policy

This Policy is regularly reviewed and was last updated on May 24 2018.