UNOS — Communication, Still another Failure


 UNOS (United Network for Organ Sharing) keeps records of available organs and those who need them.  Then they coordinate the transplantation of the organs.  A very valuable and necessary service.  Beyond that, they are a data collection agency. They will be happy to tell you the number of people on the transplant list and the number of organs available.  They also provide organ and transplant data by race, age, gender and other categories.  So far, though, I have been unable to find any evidence of a real, visionary effort to increase the number of organs.  It starts with communication and at that UNOS is a failure.  All they do is gather information and respond when contacted and they do that poorly. 

In this blog, I will discuss UNOS failure number two — addressing the problem of minority organ donation (Don’t let me hear from anyone that it is the fault of minorities.  It isn’t!). 

How many of you have ever heard of MOTTEP (Minority Organ Tissue Transplant Education Program)?  Very few I’ll bet.  http://www.nationalmottep.org/  It is dedicated to doing what UNOS ought to do.  National Minority Awareness Day originated with MOTTEP at Howard University in Washington, D.C. The event was first recognized in 1996 by President Clinton.

First the problem: The following language is taken from: http://www.organdonor.gov/donor/index.htm) “—- about half of all the people on the organ waiting list are minorities who have a particularly high need for organ transplants because some diseases of the kidney, heart, lung, pancreas, and liver are found more frequently in racial and ethnic minority populations than in the general population. For example, African Americans, Asians and Pacific Islanders, and Hispanics are three times more likely than Whites to suffer from end-stage renal (kidney) disease, often as the result of high blood pressure and other conditions that can damage the kidneys. Native Americans are four times more likely than Whites to suffer from diabetes. Some of these conditions that can result in organ failure are best treated through transplantation and others can only be treated by this life-saving procedure.  Because certain blood types are more common in ethnic minority populations, increasing the number of minority donors can increase the frequency of minority transplants”.  For more information on minorities and organ donation, visit the Web site of the National Minority Organ Tissue Transplant Education Program at www.mottep.org or go to the Data section of the UNOS Web site or the Division of Transplantation in the Health Resources and Services Administration at www.organdonor.gov

The problem I have with UNOS’ effort is that you must go to them to get information.  Their attempts to bring information to anyone never mind minorities, is almost non-existent.  They depend on others to do that OPOs, Organ Procurement Organizations) with their own money.  In order to obtain UNOS information, you must have an intense interest in the subject, a computer and the knowledge to use it.  The minority organ donation issue is so important there should be a national campaign aimed at bringing information to the people who need it.  Note, though, that while UNOS may provide transplant information about minorities it provides nothing, absolutely no information that addresses genetic, cultural and language differences. Worse yet, I have found no emotion or compassion in any area of the UNOS website.  They are like the old “Dragnet” show, “Just the facts m’am, just the facts.”  I have never seen or heard of an impassioned plea from UNOS.  The OPOs make impassioned pleas but UNOS is far too sophisticated to stoop so low as to show some emotion.  The message they send is, “Here is the information.  If you choose not to seek it out and use it that is your problem.” 

Here’s an example of a cultural problem and one reason African Americans in particular are reluctant to become organ donors. Excerpt from American Renaissance News http://www.amren.com/news/news04/03/30/organdonation.htmlThe disparity between African-American and white organ donation is rooted in the historical distrust of the medical establishment by African-Americans and the disparity in health care between minorities and whites, doctors say. Dr. Devon John, a black surgeon at New York University Medical Center who specializes in transplanting the pancreas, blames the mystique surrounding the process of organ donation. Many minorities fear that they won’t get the best health care if they sign an organ donor card, or physicians won’t revive them if they are ill because they want their organs, he said. A lot of that wariness is the result of the history of discrimination in health care. In 1932, the U.S. Department of Public Health began the Tuskegee experiment. For 40 years, doctors withheld treatment from more than 600 African-American men suffering from syphilis to study the long-term effects of the disease.”

I find it interesting that UNOS likes to say that the national transplant waiting list is “colorblind,” that race information is not specified in the medical data.  Why not?  Maybe it should be.  Are they so afraid of sounding racist that they would ignore the importance of the racial issue? 

The solution to this and other organ donation problems lies in one word — COMMUNICATION.  While there is a lot more to good communication than I list here, here’s some advice, UNOS, from someone who has served as a communications consultant longer than UNOS has existed.  My eight points on how to communicate more effectively.

  1. Audience oriented.  It must take culture and other elements into consideration.
  2. Focused messages.  Knowing the audience means you know what then need to hear or read.  Messages should be repeated and there should be very few of them.
  3. Funded.  You cannot depend on public service announcements to properly address an issue as important as this (even the military services buy advertising).
  4. Trusted.  Well known, respected people must become leaders in the effort.  We can’t leave communication to anyone who answers the phone or is available at the moment (regionally your greatest resources are the OPOs, give them some help for heaven’s sake).
  5. Frequent.  One day a year devoted to “awareness” is folly.  Every day should be one not of awareness but of increasing commitment.
  6. Accurate.   We must acknowledge fears and concerns and speak to them with consistently factual information.
  7. Compassion.  People must know the communicator cares, really cares.  Data communicates data.  People must combine that data with compassion.
  8. Measurement.  The feelings and concerns of audiences must be regularly measured so that messages can be adjusted and new issues can be addressed.

 As a communications consultant my motto has always been, “If communication is not your top priority, all other priorities are at risk.”  That statement has never been truer than it is right now!  

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About Bob Aronson

Bob Aronson is a former journalist, a Minnesota Governor's Press Secretary and talk show host. For nearly a quarter of a century, he led the Aronson Partnership, a Minnesota-based communications consultancy that prepared corporate and government executives for crisis situations, regulatory testimony, media interviews and Presentations. Among his clients were all three U.S. Mayo Clinic locations, 3M, general Mills, CH2M Hill, the U.S. Department of Energy and scores more. In 2007 bob had a heart transplant after suffering from idiopathic dilated cardiomyopathy for 12 years. Shortly after he got his new heart he founded the now 4,300 member Facebook support group, Organ Transplant Initiative. At the same time, he established the Bob's Newheart blog where he has posted nearly 300 columns on organ donation, transplantation and other health related issues. The Viewpoint blog was started in late 2016 and bears the name of the Radio Talk show Bob did from 1966 until 1974, when he resigned to become Minnesota Governor Rudy Perpich first Press secretary. Bob and his artist wife Robin, live in Jacksonville, Florida with their two dogs, Reilly and Ziggy. Bob is also a woodworker and makes all of the furnishings for Robin's art festival booth. He also makes one of a kind jewelry or "memories" boxes that he donates to select transplant patients, caregivers, donor families and others who have somehow contributed to making life easier for the ill, the elderly and the less fortunate. Bob is in the final stages of editing two full-length novels that will be available on Kindle when ready for release sometime in early 2017. One is a sci fi novel about an amazing discovery near Roswell, New Mexico and you will be surprised to find it has nothing to do with the Roswell story everyone knows. It features a woman scientist who investigates impact craters for the U.S. Department of the Interior, Dr. Rita Sylvester and her female student intern. The other book is a political thriller that introduces a new hero to the genre, Fargo Dennison.

Posted on February 19, 2008, in UNOS & Organ Donation. Bookmark the permalink. 2 Comments.

  1. Jennifer:

    First let me thank you for your interest and for taking the time to comment. We need more people like you.

    My blog does not suggest a duplication of efforts but rather a centrally coordinated and funded effort that carefully considers all the ways to reach potential donors. This effort should also include the importance of cultural, language and communication preference differences.

    I think your efforts are admirable and I have written often about my admiration and appreciation for OPOs and all they do. But each OPO has its own approach some of which are extremely creative others are not. Wouldn’t it be great if only the best most creative of approaches was the single approach we use (with consideration of special circumstances in each OPO’s region).

    Again, thank you Jennifer. Please stay with us and with the effort and please continue to offer your insight and thoughts.

    bob

    Like

  2. Why should UNOS spend its time on these kinds of communications, when there are other national groups already doing so? Seems like the duplication of efforts wouldn’t be the best use of resources. UNOS works closely with the other transplant organizations (OPOs, MOTTEP, AOPO, Donate Life America, HRSA) – in fact, we ALL work closely together (speaking as an OPO employee)…regular email communications, members-only websites for intra-organizational communication, national conferences where we all meet in person.

    I’m not sure charging UNOS with these new public education tasks is the way to go. Does their contract with HRSA even allow for such activities? If HRSA is only paying them to coordinate certain things, then that’s all they’re really able to do with their federal funding.

    Like

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