TriNetx Overview
Use:
TriNetX is a third party web-based application that we host data for WashU. We host the data and an agent (client) that takes requests from TriNetX application and returns counts back to the application. The data lives within our firewall. The data is extracted from OMOP on a monthly basis and transformed into TriNetX CDM withing WashU. The transformed limited data lives on the appliance hosted on WashU’s network. Both WashU, and external users can run count queries. External users are mostly pharma and CROs who want to recruit patients. WashU users can use the data for both recruitment and retrospective/observational studies.
Users can query each of the participating healthcare organizations data and get the counts of patients matching their inclusion/exclusion criteria, acquire patient counts, and see which site(s) is best suited for recruitment for a specific type of trial. Clinical research organizations also participate. Good for feasibility, grant preparations, observational studies and visualizations.
There are workflows in place for those kinds of users to request a particular set of users on a site’s side. Center for Clinical Studies group receives email notifications from the application when a new study or collaboration is requested for Wash U. At that point they take over the entire workflow of finding a PII and everything that happens from that point forward.
For us, we don't need to do anything about it. As administrators, we will see those emails come in every day. But other than that, we are not required to do anything as far as that workflow is concerned.
1. We just need to make sure that the users on the WashU side are added, deactivated or locked if any employees have left a group, or a modification is requested that requires a different set of privileges (rarely).
2. Potential users will request through us directly as WashU administrators, or through TriNetX directly who would then redirected to us. The request is usually via email.
3. Requests are usually based on a recent demo they have seen or referral from a colleague. Snehil has a rule setup in Outlook. Usually to Snehil directly, but we can request it go to the entire group or I2Help. Reach out to them and ask what sort of activities would they like to do? Based on the response, we then create their account. The one thing that we make sure when we create account is that it's a wustl.edu or BJC because we don't give access to people on their Gmail or any other external or non-WashU or non-BJC email. Phone number is optional. Title can also be included.
4. User Permissions, there is usually no checks here. Only when they request analytics do you need to check something. This is where a researcher usually leaves nothing. Usually, it's only when they request access to analytics (advanced level), we check this box. Basic access to be able to run count queries, all you would have to do is choose a network. And we only give access to the WashU network. Once you submit, the system will send an email with their credentials. Once they have credentials, they will have to reset their passwords and also sign the data use agreement.
5. Admins can grant privileges to others and create users.
By default, there is no PHI in the backend. TriNetX has no access to PHI of any sort. The patient IDs are the de identified OMOP IDs. Export patient IDs is also very restricted. We don't allow users to do that. It can only be done when somebody presents with an IRB project where initially they did research and have a good enough number of patients that match their study criteria.
General access only requires a Wustl email. Does not expose patient level data, only aggregate patient counts. Unless somebody presents with an IRB, approved project request, we don't give them exported patient IDs. If user wants additional data or to further explore, they need to be directed to the intake form with IRB and an SOW, etc.
We don't advertise this to students, they may not even know and if they know and they request us, we can make a determination based on what they're trying to do if it is allowed for them or not.
Rarely BJC and never any students.
We have not publicized TriNetX so it is either word of mouth or from conferences, etc.
Locked accounts:
There are some accounts with a little lock symbol next to their name.These are old employees that no longer work at WashU, or they are people who no longer need access, so their accounts have been locked. You can lock and disable, or just lock.
Data Source:
The data source for TriNetX up until about 2022 was I2B2, and we aren’t supporting I2B2 much anymore. Now it is OMOP.
If you had more than User Access you would be able to see a usage dashboard, etc. or profiles and queries that people run.
Training:
Help Center or the training center. The Training Center has a lot of good information. There are some webinars and a lot of documents.
Provisioning accounts only. Data questions and data count inquiries can be forwarded to
Snehil needs to request Chris to send all the emails to I2Help email.
Need Hosting Info and Contacts
Passwords expire every 6 months.
The TriNetX platform has regularly scheduled maintenance every Wednesday from 8pm to 10pm ET.
User agreement has to be accepted online.
Admin Portal
When adding Users, navigate to the admin portal located within your user profile in the top right corner:
You will see an option to add new users once in the Admin portal.
Adding Users
New users can be added via the Admin Portal in the upper right hand corner of the page.
After selecting Admin, new users can be added with the blue Add User button.
Removing Users
User accounts can be set to disabled by selecting the user you want to update the permissions for and selecting Disable account.
After selecting the user account you want to update, you can select Disable under Actions.
User Information
After selecting ‘Add User’, add information pertaining to the user you are creating. This will include First Name, Last Name, Title, Email, Phone(office), Phone(mobile).
Permissions and Features
There are additional drop downs such as User Permissions, Analytics Features, Admin Permissions, and Network Permissions.
User Permissions
Most requests will not require any boxes checked although additional user permissions can be requested such as Exporting Patient IDs, Access to Compliance Data, Access to Analytics, Connect Contact, and additional permissions.
Analytics
For requests to access Analytics, you can enable the “Access to Analytics” which will allow additional enabling of Analytics Features.
Network Permissions
When setting Network Permissions, enabling ‘Washington University STL’ is the only checkbox required for User Requests.
Last updated 3/1/2024
User agreement below.
Welcome to TriNetX Live
User Agreement
BY CLICKING ON THE “ACCEPT” BUTTON BELOW, YOU HEREBY ACKNOWLEDGE THAT YOU HAVE READ, ACCEPT AND AGREE TO BE BOUND BY THIS END USER AGREEMENT AND ALL TERMS, CONDITIONS, POLICIES AND GUIDELINES INCORPORATED INTO THIS END USER AGREEMENT BY REFERENCE (THE “AGREEMENT”), AND AGREE THAT WE MAY COLLECT, USE AND TRANSFER YOUR PERSONAL AND USER DATA TO TRINETX IN THE UNITED STATES. BY CONTINUING TO ACCEPT THIS AGREEMENT, YOU CONSENT TO THE USE AND TRANSFER OF YOUR PERSONAL AND USER DATA AS DESCRIBED HEREIN.
IF YOU DO NOT AGREE TO THE TERMS AND CONDITIONS CONTAINED IN THE AGREEMENT, YOU ARE NOT AUTHORIZED TO ACCESS OR USE THE TRINETX NETWORK (THE “NETWORK”).
WE MAY, FROM TIME TO TIME, CHANGE THE TERMS OF THIS AGREEMENT, WHEN THE TERMS ARE CHANGED, WE WILL GIVE YOU AN OPPORTUNITY EITHER TO AGREE TO SUCH CHANGED TERMS OR TERMINATE USE OF THE NETWORK. THE MOST CURRENT VERSION OF THIS AGREEMENT CAN BE ACCESSED AT ANY TIME FROM YOUR USER PROFILE.
Welcome to the Network which is owned and operated by TriNetX, LLC (“TNX”). The Network is an informatics platform designed to facilitate clinical research, study design, and clinical trial recruitment activities and is not to be used in the diagnosis or treatment of patients. Accordingly, all medical treatment and diagnostic decisions are your responsibility and the responsibility of other professional healthcare providers with whom you work or associate, and such treatment and decisions are not the responsibility of TNX. You have been authorized to access the Network pursuant to an arrangement or agreement your organization has with TNX.
1. ACCESS TO THE NETWORK. Subject to the terms and conditions contained herein, TNX hereby grants you a limited right to access and use the Network. You agree that you shall use the Network only in accordance with the terms of this Agreement, in a manner consistent with applicable laws, all applicable professional and ethical standards and requirements, any applicable rules, policies, and procedures established by your organization, and otherwise in accordance with this Agreement and the rules, policies and procedures established by TNX for use of the Network. You shall not: (a) modify, translate, reverse engineer, disassemble, decompile, or create derivative works of the Network or allow a third party, whether directly or indirectly (including, but not limited to the direct or indirect use of wizards, agents, bots or other utilities), to modify, translate, reverse engineer, disassemble, decompile or create derivative works of the Network; or (b) transfer, distribute, sell, lease, rent, disclose or provide access to the Network to any third party or use the Network to provide service bureau, time sharing or other services or products to third parties.
2. SECURITY AND PASSWORDS. Access to the Network is enabled only by usernames and passwords. You shall maintain your password in strict confidence. In no event shall you share your password with any third party or allow another person to access the Network using your password. You shall immediately notify TNX if you have any reason to believe that your username or password has been lost or compromised or misused in any way.
3. ACCEPTABLE USE. You agree not to access or use the Network in an unlawful way or for an unlawful or illegitimate purpose. You shall not use the Network in any manner that could damage, disable or impair the Network, our systems or networks.
4. NON DISCLOSURE AND CONFIDENTIALITY.
1. In using the Network, you will have access to confidential information of TNX, its suppliers and other Network users (“Confidential Information”) that may include, but is not limited to, software, technology, logic, techniques, formats, tools, designs, concepts, methods, processes, ideas, technical materials and information, and related documentation, hospital and provider names and contact information, and certain aggregate, de-identified health information such as, for example, the number of patients that satisfy inclusion and exclusion criteria for a query.
2. You agree to maintain and safeguard vigilantly the privacy and security of all Confidential Information. Without limiting the foregoing, you agree to undertake all necessary measures to ensure the privacy and security of all Confidential Information including without limitation: (i) to use the Network and the Confidential Information only as needed to perform your responsibilities as a researcher, healthcare provider or healthcare professional; (ii) not to access, use or disclose any Confidential Information that you have no legitimate authorization to access, use or disclose; (iii) not to access the Network or any Confidential Information for any other individual or any unauthorized third party; or (iv) to restrict physical and system access to the equipment which contains Confidential Information or which gives access to the Network.
3. You shall immediately notify, and cooperate fully with TNX in the event you discover or suspect: (a) any unauthorized use of or access to the Network; (b) any inappropriate use or disclosure of information contained in the Network or obtained through use of the Network; (c) the recognition or introduction of any virus, worms, trojan horses and other destructive items; or (d) any security incident. In the event that a security incident occurs, you shall take affirmative steps to immediately notify TNX of the security incident, to cure the breach and prevent future breaches, and to mitigate the effects of the breach.
4. You acknowledge and agree that all obligations relating to Confidential Information under this Agreement will continue after termination of this Agreement and termination of access rights hereunder.
5. USE OF CONTENT.
All of the data, content, and information available on or through the Network (the "Content") is the property of TNX or its suppliers and is protected by copyright, trademark, patent, trade secret and other intellectual property law. We give you permission to display, download, store and print the Content only for your organization’s internal business purposes, but specifically excluding marketing and sales purposes. You agree not to reproduce, retransmit, distribute, disseminate, sell, publish, broadcast, or circulate the Content received through the Network to anyone, other than approved users of the Network in your organization for your organization’s internal business purposes, but specifically excluding marketing and sales purposes.
6. VIOLATION OF THIS AGREEMENT. You acknowledge that your access to the Network may be immediately suspended and this Agreement may be terminated if you violate any provision of this Agreement.
7. ACCESS TO THE NETWORK AND THE DATA, INFORMATION OR CONTENT CONTAINED THEREIN IS PROVIDED "AS IS" AND "AS AVAILABLE" WITHOUT ANY WARRANTY OR ANY KIND, EXPRESS OR IMPLIED.
Privacy Policy
This Privacy Policy (the “Privacy Policy”) is intended to inform you of TriNetX TriNetX LLC’s policies and practices regarding the collection, use, and disclosure of information that you provide to TriNetX LLC. (“TriNetX,” “we,” “us,” or “our”) and our corporate affiliates when you use our platform known as TNX™ (“TNX”) which includes TriNetX Live™, TriNetX Research™, TriNetX Services™ and our website www.TriNetX.com. This Privacy Policy is subject to occasional revision(s), and any changes will be posted on this page. You are urged to return to check the Privacy Policy for the latest updates.
1. INFORMATION WE COLLECT
TriNetX collects the following types of information:
o a. Account and Profile information: This is information about you that is personally identifiable to you either individually or in combination with other data elements like your first name, last name, e-mail address, IP Address and encrypted login credentials which are mandatory for the use of TNX. You also have the option to provide to us your business title, office phone number, and cell phone number which would make it easier for us to provide support. By accessing TNX and submitting this information, you agree to the terms of this Privacy Policy. Furthermore, you expressly consent to the processing of this information according to this Privacy Policy. The lawful basis for processing accounts is Legitimate Interest.
o b. Content you provide through our website: TNX also includes our website (trinetx.com). We collect other content that you may submit to our website, which may include social media or social networking websites operated by us e.g. you provide content to us when you provide feedback or when you participate in any interactive features, surveys, contests, promotions, sweepstakes, activities or events.
o c. Cookies: Like many websites, we also use “cookie” technology to collect additional website usage data and to improve the Site and our services. A cookie is a small data file that we transfer to your computer’s hard disk. We do not use cookies to collect personal information. Most Internet browsers automatically accept cookies. You can instruct your browser, by editing its options, to stop accepting cookies or to prompt you before accepting a cookie from the websites you visit. We will not use third-party cookies to track you.
o d. Log Data: When you use TNX, our servers automatically record information that your browser sends us (“Log Data”). This Log Data may include information such as your IP address, browser type or the domain from which you are visiting, the web-pages you visit etc. For most users accessing the Internet from an Internet service provider the IP address will be different every time you log on. We use Log Data to monitor the use of TNX, and for the Site’s technical administration. We do not associate your IP address with any other personally identifiable information to identify you personally.
o e. Contact information for Marketing purposes: We may collect contact information such as your first name, last name, email address, company and title from other sources to inform you about our products and services from time to time. The sources from where we receive this information are described in Section 2 below.
2. HOW DO WE COLLECT THIS INFORMATION
TriNetX collects information about you when you provide it to us, when you use TNX, and when other sources provide it to us, as further described below.
o a. Through the use of TNX: When your employer signs a Membership Agreement or a Master Services Agreement with us for the use of TNX, they nominate a site administrator who is responsible for creating accounts for employees to whom they would like to provide access to TNX. The information is provided directly by your employer’s nominated site administrator and not solicited by us through any other source.Their lawful basis for collecting such data is therefore Contract Fulfillment.
o b. Third party Databases: We subscribe to third party databases which provide access to contact information about businesses and employees of those businesses. This information is collected from various sources. We also get contact information from publishers when we use their services to advertise, present or publish content.
o c. The Internet: We get information from either websites or from social media sites such as LinkedIn and Conference websites which provide lists of speakers/ presenters.
o d. Conferences: As an exhibitor or a sponsor at a conference, we receive a pre-registration list of conference attendees.During the conference there may be face-to-face interaction with individuals who may provide us with their contact information directly, such as business cards, which we will store in a customer relationship management (CRM) system.
3. USE OF INFORMATION AND LAWFUL BASIS FOR PROCESSING (FOR EEA USERS)
o a. To provide services and customer support: The information you provide us is used to support your use of TNX and may also be utilized to provide you with information about feature enhancements, bug fixes, security patches and other changes to TNX, including system notifications, and training as well as news and materials related to other TriNetX products and services. TriNetX does not collect or maintain your information for resale purposes nor share your information with any other company or organization except as specifically disclosed herein. If you are an individual in the European Economic Area (EEA) then the Lawful Basis for processing your information under the General Data Protection Regulation (GDPR) is Contract Fulfillment.
o b. To market and promote TriNetX Products and Services: We may use your contact information to send promotional communications that may be of specific interest to you by e-mail. These communications are aimed at driving engagement and maximizing what you receive out of the Services, including information about new features, survey requests, newsletters, and events we think may be of interest to you. We also communicate with you about new product offers and promotions. You can control whether you receive these communications as described below under “Opt-out of communications.” We rely on Legitimate Interests for B2B marketing purposes as our lawful basis, in order to conform to the E.U. e-Privacy Directive (2002/58/EC), and the forthcoming e-Privacy Regulation.
4. DISCLOSING INFORMATION TO COMPLY WITH LAWS AND SIMILAR DISCLOSURE
We reserve the right to access, use, preserve, or disclose your information when we have a good faith belief that access, use, preservation, or disclosure of such information is reasonably necessary to: (1) satisfy any applicable law or regulation; (2) respond to claims and/or to comply with a judicial proceeding, court order, or legal process served on TriNetX; and (3) to protect and defend our rights or property, and/or the rights or property of the visitors/users of our Site, or third parties, as permitted by law , (4) detect, prevent, or otherwise address fraud, security or technical issues, or (5) enforce our Terms of Use and/or our End User Agreement, as applicable.
5. SHARING YOUR INFORMATION:
o a. Subsidiaries and Affiliates: We may share your information with our subsidiaries or affiliated companies to help us support the users of TNX. b. Business Transitions: We may share information if all or part of TNX is sold, merged, dissolved, acquired, or in a similar transaction.
6. HOW LONG DO WE KEEP INFORMATION
How long we keep information we collect about you depends on the type of information, as described in further detail below. After such time, we will either delete or anonymize your information or, if this is not possible (for example, because the information has been stored in backup archives), then we will securely store your information and isolate it from any further use until deletion is possible.
o a. Account and Profile information: We retain your account and profile information for as long as your account remains active and a reasonable period thereafter in case you decide to re-activate it. We also retain some of your information as necessary to comply with our legal obligations, to resolve disputes, to enforce our agreements, to support business operations, and to continue to develop and improve our products and services. Where we retain information for product improvement and development, we take steps to eliminate information that directly identifies you.
o b. Marketing information: If you have elected to receive marketing emails from us, we retain information about your marketing preferences for a reasonable period of time from the date you last expressed interest in our products and services, such as when you last opened an email from us or stopped using your account. We retain information derived from cookies and other tracking technologies for a reasonable period of time from the date such information was created.
7. HOW TO ACCESS AND CONTROL YOUR INFORMATION
You have choices available to you when it comes to your accessing and controlling your information. Below is a summary of those choices, how to exercise them and any limitations.
o a. Access and update your information: TNX gives you the ability to access and update certain information about yourself from the Account Profile page. You can update your profile information within your profile settings and modify content that contains information about you using the editing tools associated with that content.
o b. Deactivating your Account: If you no longer wish to use TNX please contact your administrator to deactivate your account. If you are an administrator and are unable to deactivate an account through your administrator settings, please contact TNX Support. Please be aware that deactivating your account does not delete all your information; some of your information within TNX for other users within your organization as well as is retained for legal and regulatory compliance purposes.
o c. Opt out of communications: You may opt out of receiving promotional communications from TNX by using the unsubscribe link within each email, updating your email preferences, or by contacting us as provided below to have your contact information removed from our promotional email list or registration database.
8. CHILDREN UNDER 13 YEARS OF AGE You should be aware that TNX is not intended for, nor designed to be used by, children under the age of 13 and as such, TriNetX does not intentionally gather information about visitors who are under the age of 13.
CONTACT US
Your information is controlled by TriNetX LLC. If you have questions or concerns about how your information is handled, please direct your inquiry to:
TriNetX, LLC
125 CAMBRIDGEPARKDR, SUITE #500
CAMBRIDGE, MA. 02140. USA
EMAIL: privacy@trinetx.com
If you are a resident of the European Economic Area (EEA), please contact our EU Representative.
CHAUCER CONSULTING LTD.
NORTHERN & SHELL BUILDING
10 LOWER THAMES ST.
LONDON
EC3R 6EN
EMAIL: compliance@Chaucer.com