To my friends, acquaintances, and other CaringBridge followers:

You probably did not think you would hear from me again on this site, but if you’re still out there, I have a request.  I want your feedback into an exercise that will be useful to the transplant community in determining how organs should be allocated in the future.

For those who might not know, my health is excellent.  I have the same aches and pains as any other 72 year old man, but as recently as last month I underwent an extensive heart examination and passed with flying colors.  But that’s not the reason for this post.

First, a little background.  Since my transplant I have become highly involved in the transplant community.  I joined the board of LifeShare Oklahoma, the organ procurement organization that serves Oklahoma.  There are 58 OPOs in the country.  OPOs recruit organ and tissue donors, manage the medical care of donors after brain death and prior to recovery, and manage all the logistics of recovery and transportation of donated organs.

I have also become the Region 4 (Oklahoma and Texas) representative to the OPTN/UNOS Patient Affairs Committee.  We provide a patient perspective to all OPTN/UNOS activity.

In June, I was elected to the board of OPTN/UNOS.  The Organ Procurement and Transportation Network is an organization of all transplant centers, OPOs, and related histocompatibility labs in the country.  OPTN is created by statute and regulated by the US Department of Health and Human Services.  The statute provides for management of OPTN to be provided by a contractor.  The United Network for Organ Sharing a non-profit organization that manages OPTN under contract with HHS.  The boards of OPTN and UNOS are one and the same, but the mission of UNOS is somewhat broader to include some transplant related activities that are not directly OPTN related.

Perhaps the most critical aspect of organ transplant is that there are fewer available organs than patients.  An allocation system has been developed to match organs with candidates.  The ground rules for allocation are under constant review and significant changes have occurred within the last few years.  The primary change is to allocate organs more broadly and to limit the impact of geographic proximity of the donor to the candidate.

The future of allocation is to create a more seamless system that is too complicated for this post.  However, one aspect of the new system will be to obtain feedback from the general public on certain values questions that do not lend themselves to scientific analysis.  That is where you come in.  The following is a cut and paste document produced by the UNOS staff.  It will explain the exercise I hope you will take.  The entire process will take about 30 minutes.  I want you to know that some of the technology may be frustrating.  It is provided by a third party and has proved to be less than ideal.  Also, I encourage you to watch the video, but I will say that it gets very wonky towards the middle.

­What we want from you to your opinion as to the relative weight that should be given certain attributes related to allocation.  Your feedback, along with that of many others, will inform the allocation process as we go forward.  Thank you for your help.

Jim

The Organ Procurement and Transplantation Network is developing a more equitable system of allocating deceased donor organs. The new approach, continuous distribution, will provide organ offers by considering all factors that contribute toward a successful transplant, at once.  We need your input on the next steps in developing this framework.

A New Way to Allocate Organs

Continuous distribution will change organ allocation from placing and considering patients within categories by sequence, to considering multiple patient factors, “attributes”, all at once with an overall score.  Factors related to the overall score include medical urgency, post-transplant survival, candidate biology, patient access, and placement efficiency.

The first organ to develop this framework is lung. The OPTN is working on developing the lung allocation policy and have selected the factors that should be included when coming up with the overall score of a candidate.  Your input will help inform the decisions about the weight of each factor and its influence on the overall score.

Informed Decision Making

A software tool called Decision Lens, which uses a method called the Analytic Hierarchy Process (AHP), is being used to organize this process.

This method was chosen because it has been used effectively by other health care groups to involve patients in making clinical decisions.

We are reaching out to you as a patient to invite you to participate in this exercise.  Patient input is critical to establish a new organ allocation policy that works for everyone.

How to Participate in the Exercise

1. Click here to register for the exercise
2. Within two business days of registering, you will receive an email with log in instructions

• The prioritization exercise will only take 5-10 minutes to complete.
• The deadline to participate and have your input included is October 1.
• Learn more about this exercise and Continuous Distribution by watching an educational video here.

We understand the importance and value of patient input and hope you participate – please reach out to Sara Rose Wells at sararose.wells@unos.org or 804-782-4642 if you have any questions.