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UNOS — Communication, Still another FailureFebruary 19, 2008

Posted Nov 04 2009 10:02pm

 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 Newshttp://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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