UNOS policies & terms
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UNOS Notice of Privacy Practice
Who are we?
United Network for Organ Sharing (UNOS) is a non-profit corporation that serves as the nation’s Organ Procurement and Transplantation Network. We operate multiple Websites (unos.org, transplantliving.org, and transplantpro.org). We also operate UNOS Systems, which are any computer software or mobile application under UNOS’s control, whether partial or otherwise, including but not limited to UNetSM, Waitlist, Tiedi®, Kidney Paired Donation (KPD), Secure Enterprise, Data Services Portal, DonorNet®, DonorNet Mobile, and TransNetSM. UNOS understands how important the privacy of personal information is to our users. This Notice of Privacy Practice applies to information we collect when you use any of our public websites or systems.
What types of data do we collect?
UNOS Websites Individually identifiable information about the Website user, such as:
- e-mail address
- phone number
- other demographic information
- payment details
UNOS Systems Individually identifiable information about key personnel at member institutions, such as:
- Email addresses
Individually identifiable health-related information about organ donors and potential organ donors, transplant candidates and potential transplant candidates, and transplant recipients, such as:
- physical or mental health
- provision of health care to the individual
- individual’s payment for the provision of health care
How do we collect the data?
UNOS Websites You provide data to us, when you:
- Sign up to be a volunteer for UNOS or the OPTN
- Respond to surveys on our websites
- Provide public comment
- Request data
- Search for jobs or submit employment applications on our websites or sign up for career alerts
- Conduct searches on our websites
- Purchase items from our online store
- Subscribe for newsletters and mailing lists
- ”Follow”, ”like”, post to, or interact with, our social media accounts, including Facebook, LinkedIn, Twitter, YouTube, Instagram, and Google+
- Submit an inquiry, feedback, correspondence, or complaints
- Register for UNOS events
- Donate to UNOS
Through “cookies” when you browse our websites:
- Type of internet browser you’re using
- Type of operating system you’re using
- Domain name of the website you clicked on to get to our websites
- IP address, and the server owned by your Internet Service Provider
UNOS Systems UNOS members submit data to us when they use our systems to facilitate the match process, including when they:
- Identify organ donors
- Match organ donors with recipients
- Follow transplant outcomes
- Submit information related to UNOS member compliance with OPTN obligations
Through tracking technology, such as:
- IP address, and the server owned by your Internet Service Provider
Through our TransNet mobile application, such as:
- Device brand and model
- Device operating system
- Crash reports from the device if the application crashes, including information on how much RAM and storage space are free on the device, and whether the device has been jailbroken or rooted.
- Usernames and the organ procurement organization with which the user is associated
- Actions performed within the application, such as printing and scanning labels
How do we use the data?
- To store and process the information to better understand your needs and how we can improve our services
- To contact you, including through newsletters you choose to receive
- To identify diversity and equal opportunities records, and to carry out background checks
- To track usage behavior
- To compile aggregate data to facilitate content improvements
- To facilitate the entire transplantation process, including:
- identifying organ donors
- matching organ donors with recipients
- following transplant outcomes
- validate the accuracy of donor and recipient data
- To monitor member organizations’ compliance with OPTN Obligations
- To review and reporting on the status of organ donation and transplantation in the United States
- To inform quality assurance and improvement activities
- To provide data for bona fide research or analysis purposes
- To improve System performance, including
- to help diagnose problems with our server
- to monitor and support administration of our Systems
With whom do we share the data?
- Third party analytics tools to determine how users use our websites, services and software, to improve our website for visitors.
- Service providers as is reasonably necessary to provide services under reasonable confidentiality terms.
- Organ procurement organizations and transplant hospitals
- Bona fide researchers, if certain requirements are satisfied and data use agreements are executed
- Health Resources and Services Administration (HRSA)
- The contractor for the operation of the Scientific Registry for Transplant Recipients (SRTR)
How long we keep data and how we manage it
UNOS websites, services and software retain the data we collect indefinitely. The data we collect are securely stored on our servers according to industry standards and best practices for security. You do not have the ability to limit sharing of data provided to UNOS through UNOS Systems. If you wish to have your data that was submitted to UNOS through UNOS websites edited or removed, or if you have concerns about your data, you can contact [email protected].
Your rights to your data
You have certain rights in respect of the information that we collect about you, including:
- the right to be informed of the ways in which we use your information
- the right to ask us not to process your personal data for marketing purposes
- the right to request access to the information that we hold about you
- the right to request that we correct or rectify any information that we hold about you which is out of date or incorrect
- the right to withdraw your consent for our use of your information, which you can do by contacting us
- the right to receive a copy of any information we hold about you
- in certain circumstances, the right to ask us to limit or cease processing or erase information we hold about you
How to file a Privacy Complaint
Anyone can file a privacy complaint.
Your Privacy complaint must:
- Be filed in writing by mail, fax, e-mail, or via the Privacy phone line.
- Name the covered entity or business associate involved, and describe the acts or omissions, you believed violated the requirements of Privacy
- Be filed within 180 days of when you knew that the act or omission complained of occurred. UNOS may extend the 180-day period if you can show “good cause”
Complete as much information as possible, including:
- Your name
- Full address
- Telephone numbers (include area code)
- E-mail address (if available)
- Name, full address and telephone number of the person, agency, or organization you believe violated your (or someone else’s) health information privacy rights or committed another violation of the Privacy or Security Rule
- Brief description of what happened. How, why, and when do you believe your (or someone else’s) health information privacy rights were violated, or how the Privacy or Security Rule otherwise was violated
- Any other relevant information
- Your signature and date of complaint
If you are filing a complaint on someone’s behalf, also provide the name of the person on whose behalf you are filing.
You may also include:
- If you need special accommodations for us to communicate with you about this complaint
- Contact information for someone who can help us reach you if we cannot reach you directly
- If you have filed your complaint somewhere else and where you’ve filed
You may either:
- Mail your complaint to:
Office of General Counsel and Privacy Officer
United Network for Organ Sharing
700 North 4th Street, Richmond, Virginia 23219
- Email the complaint to [email protected] (Please note that communication by unencrypted email presents a risk that personally identifiable information contained in such an email, may be intercepted by unauthorized third parties)
- Fax the complaint to 1-804-782-4816
- Call 1-888-850-0109
Upon receipt of a privacy complaint, a member of the UNOS Privacy Office will send a written acknowledgment within 24 hours.
Throughout the duration of the investigation, the UNOS Privacy Office may make some initial contacts and/or verify the basic facts of the situation and/or provide periodic updates to the complainant.
Once the investigation is complete, the Privacy Officer will make a determination about the privacy complaint. Privacy complaint outcomes include: substantiated privacy complaint, unsubstantiated privacy complaint, or unable to determine based on investigation. A letter is then sent to the individual indicating the outcome of the privacy complaint.
The Privacy Officer also maintains a paper and/or electronic file on the matter, as appropriate.
Last Modified: September 12, 2018
UNOS provides access to UNOS Systems and other software and data to approved transplant professionals in order to match organ donors with recipients as well as for certain quality assurance and improvement activities related to organ transplantation. UNOS Systems are provided by United Network for Organ Sharing (“UNOS”), located at 700 N. 4th Street, Richmond, Virginia 23219, United States.
- “UNOS Systems” is defined as any computer software or mobile application under UNOS’s control, whether partial or otherwise, including but not limited to UNetsm, Waitlist, Tiedi®, Kidney Paired Donation (KPD), Secure Enterprise, Data Services Portal, DonorNet®, and TransNetsm. UNOS Systems are a platform to collect, store and share among authorized users, health-related information for the purpose of facilitating safe, effective, fair, and efficient organ transplantation. UNOS Systems contain protected health information (PHI) necessary to match organ donors with recipients, to monitor compliance of member organizations with OPTN requirements, to review and report on the status of organ donation and transplantation in the United States.
- “Health-related information” means all individually identifiable health information, including demographic information and information related to an individual’s physical or mental health, the provision of health care to the individual, or the individual’s payment for the provision of health care.
- Data Collection and Use. You represent and warrant that you have obtained the proper consents, authorizations, and releases from individuals to the fullest extent required by applicable law before accessing any health-related information in UNOS Systems, or that your access, viewing, downloading or other use of any health related information in UNOS Systems is permitted under the Health Insurance Portability and Accountability Act of 1996, and any amendments and regulations promulgated therefrom (“HIPAA”). You are solely responsible for any health-related information exported from UNOS Systems by you or your authorized personnel (employees, contractors and/or patients). You represent and warrant that you will export and subsequently use protected health information only as permitted by HIPAA and applicable federal and state laws.
- No Third-Party Access. Except as required by law and described below, you will not permit any third party to have access to UNOS Systems using your account. You agree that you are responsible for ensuring that health-related information is properly protected under applicable law.
- Acceptable Use. You agree to use UNOS Systems only for its intended purpose and in an authorized manner. You must use UNOS Systems in compliance with all privacy, data protection, intellectual property, and other applicable laws. The following uses of UNOS Systems are prohibited. You may not:
- attempt to interfere with, harm, reverse engineer, steal from, or gain unauthorized access to UNOS Systems, user accounts, or the technology and equipment supporting UNOS Systems;
- frame or link to UNOS Systems without permission;
- use data mining, robots, or other data gathering devices on or through UNOS Systems, unless specifically allowed by these Terms;
- impersonate another person, or misrepresent your affiliation with a person or entity;
- sell, transfer, or assign any of your rights to use UNOS Systems to a third party without express written consent from UNOS; or
- use UNOS Systems in an illegal way or to commit an illegal act in relation to UNOS Systems.
- Data Accuracy. You represent and warrant that the data entered by you or your authorized personnel in UNOS Systems are accurate, timely, and complete to the best of your knowledge, information and belief; and that these data are based upon information contained in corresponding medical records and other source documents, or where appropriate, are based upon clinical observation
- Account Creation and Secure Credentials
- You agree that if you create an account and use UNOS Systems on behalf of a UNOS member, you have the necessary legal authority and capacity to do so as an authorized agent of the health service provider. Such UNOS member will be the primary account holder. You agree that you have the authority to bind the UNOS member in legal agreements and contracts. Your agreement to these Terms also binds such UNOS member.
- Protecting Your Log-In Credentials. As a registered user, you will have log-in information, including a username and password. Your account is personal to the primary account holder, and you may not share your account and log-in information with, or allow access to your account by any third party. As you will be responsible for all activity that occurs under your account and access credentials, you should take care to preserve the confidentiality of your username and password, and any device that you use to access UNOS Systems.
- Communications. You agree to receive email from us at the email address you provided to us for informational and customer service-related purposes.
- UNOS’s Content – Ownership and Use.
- UNOS Content. The contents of UNOS Systems include: designs, text, graphics, images, video, information, logos, button icons, software, audio files, computer code, and other UNOS content (collectively, “UNOS Content”). All UNOS Content and the compilation (meaning the collection, arrangement, and assembly) of all UNOS Content are the property of UNOS or its licensors and are protected under copyright, trademark, and other laws.
- UNOS Marks. UNOS, the UNOS logo, and other UNOS logos and product and service names are or may be trademarks of UNOS (the “UNOS Marks”). Without our prior written permission, and except as solely enabled by any link as provided by us, you agree not to display or use in any manner the UNOS Marks.
- Consequences of Violating These Terms
- UNOS reserves the right to suspend or terminate your account and prevent access to UNOS Systems for any reason, at our discretion. We reserve the right to refuse to provide UNOS Systems access to you in the future.
- We may review and remove any User Content at any time for any reason, including for activity which, in our sole judgment: violates these Terms; violates applicable laws, rules, or regulations; is abusive, disruptive, offensive or illegal; or violates the rights of, or harms or threatens the safety of, users of UNOS Systems.
- You are responsible for any claims, fees, fines, penalties, and other liability incurred by us or others caused by or arising out of your breach of these Terms and your use of UNOS Systems.
- Reactivation of any suspended or terminated account will be subject to the sole discretion of authorized UNOS staff.
- Revisions to Terms. We may revise these Terms at any time by posting an updated version to this web page. You should visit this page periodically to review the most current Terms because you are bound by them. Your continued use of UNOS Systems after a change to these Terms constitutes your binding acceptance of these Terms.
- General Terms
- These Terms constitute the entire agreement between you and UNOS concerning your use of UNOS Systems. Our failure to exercise or enforce any right or provision of these Terms shall not constitute a waiver of such right or provision. If any provision of these Terms is found by a court of competent jurisdiction to be invalid, the parties nevertheless agree that the court should endeavor to give effect to the parties’ intentions as reflected in the provision, and the other provisions of these Terms remain in full force and effect. The section titles and annotations in these Terms are for convenience only and have no legal or contractual effect.
- These Terms and the relationship between you and UNOS shall be governed by the laws of the state of Virginia without regard to its conflict of law provisions. You and UNOS agree to submit to the personal and exclusive arbitration of any disputes relating to your use of UNOS Systems under the rules of the American Arbitration Association. Any such arbitration, to the extent necessary, shall be conducted in the City of Richmond in the state of Virginia. You covenant not to sue UNOS in any other forum.
UNOS Policy on Financial Conflict of Interest
Policy and Procedures on Financial Conflict of Interest to Promote Objectivity in Public Health Service-Funded Research
Approved: March 7, 2023
United Network for Organ Sharing (“UNOS”) adopts this Policy to promote objectivity in PHS-Funded Research by establishing standards that provide a reasonable expectation that the design, conduct, and reporting of such PHS-Funded Research are free from bias resulting from Investigators’ Financial Conflicts of Interest. UNOS adopts this Policy as required to implement and to comply with U.S. Public Health Service (“PHS”) regulations promoting objectivity in research.
UNOS Policy on User Generated Content
When you transmit, upload, post, email or otherwise make available data, text, software, music, sound, photographs, graphics, images, videos, messages or other materials on United Network for Organ Sharing’s websites or social media outlets, you give UNOS the irrevocable right to reproduce, distribute, publish, display, edit, modify, create derivative works from, and otherwise use your submission for any purpose in any form and on any media. You also agree that you will not:
- Post material that infringes on the rights of any third party, including intellectual property, privacy or publicity rights.
- Post material that is unlawful, obscene, defamatory, threatening, harassing, abusive, slanderous, hateful, or embarrassing to any other person or entity as determined by UNOS in its sole discretion.
- Post advertisements or solicitations of business.
- Impersonate another person.
- Allow any other person or entity to use your identification for posting or viewing comments.
- Post the same note more than once or “spam.”
- Make any attempt to solicit organ donation from a deceased donor ahead of other waiting candidates in a manner that subverts the established principles and objectives of equitable organ allocation.
UNOS reserves the right (but is not obligated) to do any or all of the following, in its sole discretion:
- Remove communications that are abusive, illegal or disruptive, or that otherwise fail to conform to these Terms and Conditions.
- Terminate a user’s access to the blog feature upon any breach of these Terms and Conditions.
- Edit or delete any communications posted on the blog feature, regardless of whether such communications violate these standards.
The views and opinions expressed in comments are strictly those of the author(s) and in no way represent those of UNOS. We assume no liability for the information therein and extend no implied or expressed warranty or guarantee of accuracy. Finally, you agree that you will indemnify UNOS against any damages, losses, liabilities, judgments, costs or expenses (including reasonable attorneys’ fees and costs) arising out of a claim by a third party relating to any material you have posted.
Social media guidelines
UNOS encourages comments, discussion and posts on our various social media outlets, including Facebook, Twitter, YouTube and LinkedIn. We do not pre-moderate comments and welcome most posts. We do not delete or censor comments unless they have content that:
- is abusive
- is off-topic
- contains ad-hominem attacks
- promotes hate of any kind
- uses excessively foul language
- is blatantly spam
- is reported as abuse
- makes any attempt to solicit organ donation from a deceased donor ahead of other waiting candidates in a manner that subverts the established principles and objectives of equitable organ allocation
Please remember that when you participate in social media, your comments and/or posts may be published for all to see. For your own privacy, you shouldn’t post detailed personal medical information linked to your name. We can’t respond to every comment, particularly those that deal with individual medical cases and issues.
The content on this page was originally created on August 1, 2003 by United Network for Organ Sharing and last updated on June 16, 2015.
Filming and Photography Notice, Authorization and Release
Last Modified: November 21, 2022
Upon entering any United Network for Organ Sharing (UNOS) sponsored event, program or meeting, you enter an area where photography, audio, and video recording may occur.
By entering the event premises, you consent to interview(s), photography, audio recording, video recording and its/their release, publication, exhibition, or reproduction to be used for news, web casts, promotional purposes, telecasts, advertising, inclusion on websites, social media, or any other purpose by UNOS, the Organ Procurement Transplantation Network (OPTN), and its affiliates and representatives.
Images, photos and/or videos may be used to promote similar events in the future, and highlight the event. You release UNOS and the OPTN, its officers and employees, and each and all persons involved from any liability connected with the taking, recording, digitizing, or publication and use of interviews, photographs, computer images, video and/or or sound recordings.
By entering the event premises, you waive all rights you may have to any claims for payment or royalties in connection with any use, exhibition, streaming, web casting, televising, or other publication of these materials, regardless of the purpose or sponsoring of such use, exhibiting, broadcasting, web casting, or other publication irrespective of whether a fee for admission or sponsorship is charged. You also waive any right to inspect or approve any photo, video, or audio recording taken or the person or entity designated to do so.
You authorize UNOS to use photographic, digital or video images of you including audio, and works derived from the audio for the purpose of promoting UNOS, its programs, and organ transplantation on a variety of platforms including but not limited to social media, website, educational brochures and fundraising materials in such manner and for such length of time as UNOS may determine in its sole discretion.
Authorization is subject to revocation in writing at any time except to the extent that UNOS has already taken action in reliance on it. You may revoke Authorization by written notification to the following: [email protected].
You have been fully informed of your consent, waiver of liability, and release before entering the event.
Analytics Authorization and Agreement for UNOS Services
- Download the PDF above.
- Completed PDF should be uploaded with service request (Data, then UNOS Analytics Request) in the UNOS Service Portal within Secure Enterprise.
- Below is a copy of the agreement text.
Authorization and Agreement for UNOS Services
The undersigned institution (“Member Organization”) is a member of the United Network for Organ Sharing (“UNOS”).
Authorization. Member Organization, which is also a member of the Organ Procurement and Transplantation Network (“OPTN”), hereby authorizes UNOS to receive the data Member Organization has supplied to the OPTN that Member Organization is entitled to receive, pursuant to 42 C.F.R. §121.11(b)(1)(vii), which requires the OPTN to “Provide data to an OPTN member, without charge, that has been assembled, stored, or transformed from data originally supplied by that member.”
UNOS Services. Member Organization authorizes UNOS to use these data to provide analytical reports, products, and other tools (collectively, “Services”) to support Member Organization’s quality and improvement efforts. Member Organization authorizes UNOS to receive these data as frequently as UNOS deems reasonably necessary to provide the Services.
Rights in Data and Services. These data shall remain the sole property of Member Organization. UNOS solely owns all Services created for Member Organization, and grants Member Organization an unrestricted, perpetual, worldwide, royalty free license to the Services that are provided to Member Organization containing my Member Organization’s data.
Security. UNOS will use appropriate administrative, physical and technical safeguards to prevent use or disclosure of the data and to prevent unauthorized use or access to the data.
Duration of Authorization and UNOS Services. UNOS will provide the Services to Member Organization as a condition of Member Organization’s ongoing membership in UNOS. If Member Organization ceases its membership in UNOS, it will no longer receive the Services from UNOS.
This authorization and agreement (collectively, “Agreement”) is effective as of the date it is signed by Member Organization and will be effective until the next September 30; this Agreement will automatically renew for successive one year terms on October 1 of each successive year. This Agreement may be terminated by either party for any, or no, reason upon written notice to the other party at least thirty (30) days in advance.
I represent that I am authorized to sign this Agreement, and that all necessary approvals and authorizations have been made prior to the signing of this Agreement.
To request permission for reuse, reproduction, digitization, or translation of materials produced and copyrighted by UNOS, submit this request form.