OPTN/UNOS Board Approves New Living Donor Data Requirements

[Clark]

http://optn.transplant.hrsa.gov/news/newsDetail.asp?id=1482

OPTN/UNOS Board Approves Assessment of Organ Procurement Organization Performance, New Living Donor Data Requirements
The OPTN/UNOS Board of Directors, at its semi-annual meeting June 28, approved an addition to the OPTN bylaws to promote organ procurement organization (OPO) performance improvement by identifying and analyzing key measures. The OPTN will use a statistical model developed by the Scientific Registry of Transplant Recipients that compares, for each OPO, the number of actual organs transplanted per donor to a statistically expected rate appropriate for their area.

"These metrics will allow the OPTN to assess OPO performance in a meaningful context, based on the distinct population each one serves," said OPTN/UNOS president Charles Alexander, RN, M.S.N., M.B.A. "We believe this will help us identify opportunities for OPOs to improve wherever possible and optimize the number of organs recovered and transplanted."

The statistical model for OPO monitoring will be "risk-adjusted." This means the statistical expectations will be calculated according to the specific characteristics of the donors in the OPO's donation service area compared to similar donor characteristics nationwide. The number of organs transplanted per donor will be compared to an expected number, adjusting for the donor characteristics at each OPO. OPOs with actual results significantly below expected results may undergo additional medical peer review to identify areas for potential improvement. The OPTN has used similar risk-adjusted outcome measures for nearly 20 years to assess transplant program performance.

Additionally, the Board adopted OPTN bylaw and policy amendments to enhance reporting of living donor follow-up data on the medical and psychosocial status of living donors. Under the new requirements, the transplant center performing the living donor organ recovery will be responsible for reporting this information. While the same hospital often performs both the donor and recipient surgery, there are times when the organ is recovered at one facility and transported to a different transplant hospital. This could involve paired donation transplants or transplants where the living donor is an adult and the recipient is a child.

As soon as it is available, an executive summary of all Board meeting actions will be posted to the OPTN web site at http://optn.transplant.hrsa.gov. The site also contains summaries of proceedings from past OPTN/UNOS Board meetings.

The Organ Procurement and Transplantation Network (OPTN) is operated under contract with the U.S. Department of Health and Human Services, Health Resources and Services Administration, Division of Transplantation by the United Network for Organ Sharing (UNOS). The OPTN brings together medical professionals, transplant recipients and donor families to develop organ transplantation policy.

[Donna Luebke]

John,

Can you give us more info on what the Board approved as far as living donor followup? This press release is rather vague. 

Thanks--and thanks for being a voice at the table for donors

Donna

[Clark]

Incremental progress, Donna.  The policies and summary haven't been updated online yet, but I expect the details will be available soon.

[Clark]

FYI, the policies online haven't been updated yet, but the public comment and board reaction to the proposal, http://optn.transplant.hrsa.gov/PublicComment/pubcommentPropSub_279.pdf, was generally positive, so I don't expect or recall much, if any, change.

[Donna Luebke]

John,

What do you mean about incremental progress?  The policy for living donor data submission (which is mandatory) has been around since 1999 and the OPTN has had 5 years to develop living donation policies--cannot say their goal is donor safety when there are no policies, standards or safeguards.  Of course knowing if the donor dead or alive is important but there is so much more that should be known.  So what? Not they get credit for being compliant with policy if mark 'dead' or 'alive' rather than 'lost to followup.'  Sorry, John but I am not impressed.  Since 2003, the OPTN Living Donor Committee (in early years an ad hoc committee) has worked on the living donor data form and over again spinning their wheels with no final product because the surgeons will not allow it.  We have a right to expect high quality data.  Doubt they could set the bar any lower.  Not worthy of praise or applause. 

Donna
Kidney donor, 1994
Volunteer in organ donation and transplantation for 25 years
OPTN/UNOS Board of Directors 2003-2006
Lifebanc Board of Directors, 2006-present

[Clark]

Dear Donna,

  I, too, am disappointed at the pace of progress, and the general incomprehension and insensitivity to our demands for progress.  I am, however, more encouraged about the direction of progress than I was three years ago when I started, as well as how much more often I was not a sole advocate for donor dignity.

[brenda]

I apologize for reading this a week after posting; I've been on vacation.  Are there things we living donors can do to assist in moving these policies forward?  I greatly appreciate the time several of you put in (Donna, John, Vicki, Fr. Pat, and Dr.Freeman).  What kind of support can I offer?  Letters, phone calls, other types of time?

I would like to help future donors get better care from better preparation to follow-up, and I would like to assist in any way that increases the research on long-term outcome.

Thanks again for all of your efforts,
Brenda

[Donna Luebke]

Clark

Good to you have a sense of progress. Hard to read at times how things are going.  Any suggestions on what donors can do moving forward to get more involved regionally and nationally.  I would appreciate at if at least the Co-chair position on the OPTN Living Donor Committee would be a living donor not someone like Amy Waterman.  Until the leadership of this committee is comprised of donors, it is not really about living donors. 

Donna

[Clark]

Access Information on the June 2011 OPTN/UNOS Board of Directors Meeting
http://communication.unos.org/2011/07/access-information-on-the-june-2011-optnunos-board-of-directors-meeting/

Executive Summary
http://optn.transplant.hrsa.gov/SharedContentDocuments/Executive_Summary_0611.pdf

Living Donor Committee Slides
http://communication.unos.org/wp-content/uploads/2011/07/BoD_Report_06-11_Living_Donor_Committee.pdf

Policy Change Matrix
http://optn.transplant.hrsa.gov/SharedContentDocuments/2011-06_Policy_Notice.pdf