Guiding the Future: Patient Involvement in UNOS

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Guiding the Future: Patient Involvement in UNOS

By Jill McMaster, MA, CAPT, USNR (Ret.)
 
You have most likely heard the acronyms UNOS and OPTN before and you probably know they have something to do with the waiting list for a deceased donor organ, but what does it all really mean?
What is UNOS?
UNOS (pronounced you-nose) stands for United Network for Organ Sharing. It is a private, non-profit, membership organization. The UNOS headquarters is in Richmond, VA. For administrative purposes, UNOS has divided the country into 11 geographic regions and has a staff administrator for each.
 
The United Network for Organ Sharing (UNOS) has a significant impact on all kidney patients who choose to seek a transplant. UNOS:

    *
      Fosters public awareness to increase the number of organs for donation
    *
      Maintains the national database of transplant candidates – “the waiting list”
    *
      Establishes the policies by which candidates are matched with donated organs, a process that is the result of data collection, research, and consultation
    *
      Establishes the professional standards to which all transplant centers and organ procurement organizations in the United States must abide, and
    *
      Is involved in both deceased and living donor transplants.

 
UNOS seeks and values input from patients, organ donors, and organ donor families. You can participate by being informed, letting your opinions of policy changes be known, volunteering for committees both regionally and nationally, and serving on the national Board of Directors.
 
What is OPTN?
OPTN (usually spoken of as O-P-T-N) stands for Organ Procurement and Transplantation Network. This is the formal name of the national system for transplantation.
 
In 1984, Congress passed the National Organ Transplant Act that called for the creation of the OPTN. Legislators believed that a system composed of transplant professionals, with public input and government oversight, was preferable to one run exclusively by a government agency. Today, the OPTN regulates organ transplants from both deceased and living donors.
 
As a result of the 1984 legislation, the U.S. Department of Health and Human Services’ Health Services & Resources Administration (HRSA) contracted with the organization UNOS to operate the national transplant system, the OPTN. UNOS was first awarded the OPTN contract in 1986 and continues as the only organization ever to operate the OPTN. Over the years, the terms UNOS and OPTN have been used interchangeably by many people. The terms are not the same, though it can be difficult for those not heavily involved with transplantation to distinguish between the two. When in doubt or when activities overlap, it is often convenient to use the combined term: OPTN/UNOS.
 
How do members of the general public influence policies?
The policies that govern transplantation in the U.S. generally come about as the result of a recognized need. They are researched and initially formulated in one of UNOS’ 20 committees. Representatives from across the country, including members of the general public (patients, donors and donor family members) serve on every committee. These committees have at their disposal large amounts of data. It is possible to closely examine the consequences of current policies and model the impact of proposed policy changes.
 
Once a policy is drafted it is offered to other stakeholders for coordination: the other committees, the 11 geographic regions and the public. Pending policies for public comment, along with background materials, are posted on the OPTN website for anyone interested in submitting an opinion. Public comment periods vary from year to year. You may receive an electronic notification of a new comment period by submitting your name and e-mail address. (Go to: www.OPTN.org, Policies, Public Comment, Proposals, Mailing List)
 
Following consideration of the comments and possible adjustments to the pending proposal, the originating committee presents the proposal to the 42-member Board of Directors for final approval. Members of the general public make up approximately 25% of the board. The government does not vote on OPTN policies, but is present at all meetings in an oversight capacity.
 
How do I know what is going on at UNOS?
The best way to know what issues are being addressed by UNOS is to monitor the UNOS and OPTN websites. Here, you will be able to find annual goals for the committees, committee meeting minutes, copies of committee reports to the board of directors, and summaries of actions taken by the Board of Directors.   See specifically: www.UNOS.org, Who We Are, Committees, Kidney Committee.
 
UNOS makes every effort to make information available to the public. As an example, the menu item “data” is extremely important and easy to use. Transplant candidates may wish to use these data when selecting a transplant center or when pondering the benefits of living verses deceased donor organs. Those involved in donor awareness presentations may use these data for up-to-date information and for identifying trends—locally, regionally and nationally. The “Build Advanced” page allows you easily to create data reports tailored to your specific questions.
 
Other useful locations on the web pages include:

    * Resources for Patients. Request free copies of educational publications such as “UNOS Facts and Figures.”  Go to: www.UNOS.org, Resources, Patient Resources, UNOS Facts and Figures.
    * Publications. Request a free subscription to the magazine “Update.” This bimonthly, hard-copy publication is for UNOS members, constituencies, and the public. It addresses all issues related to organ and tissue transplantation. Go to: www.UNOS.org, Resources, Publications, UNOS Update.
    * Newsroom. Place your name on the list to be notified of press releases and updates to the patient-specific website, www.transplantliving.org. Go to: www.UNOS.org,Newsroom, e-mail news sign-up.

 
UNOS meetings are open to the general public. Regional meetings are comprehensive and conveniently located in 10 locales. At the meetings, the Regional Councilor(s) reports on activities of the Board of Directors and regional representatives to committees report on the activities of their committees. Refer to the website to learn your region and the name of your Regional Councilor. Then, watch the website calendar for dates and locations of regional meetings.
 
Personal Note
I have volunteered with UNOS for many years; attending and speaking at public forums, commenting on policies, serving at the committee level and board of directors. I currently serve as the Vice President of the Board for Patient and Donor Affairs. Throughout, I have found my time with UNOS to be extremely challenging, yet incredibly satisfying. UNOS volunteers and staff members are dedicated professionals seeking answers to exceedingly difficult problems.
 
I encourage readers to take the time to learn about UNOS, the issues under discussion, and get involved. The issues impact all kidney patients considering organ transplant.
 
For more information regarding UNOS and OPTN, please visit the following websites:
www.UNOS.org and www.optn.org.
 
About the Author
M. Jill McMaster, MA, CAPT, USNR (Ret.), is a member of the OPTN/UNOS Board of Directors, Executive Committee, and Kidney Transplantation Committee. She is retired from the Central Intelligence Agency and the US Navy and Naval Reserve. Jill has been a volunteer with kidney-and transplant-related organizations for over 25 years and is currently an RSN volunteer. She is a renal patient herself as the recipient of a deceased donor kidney.
   
Last Updated December 2008
 


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