Donor Care Network Programs:

Experts estimate that over 25% of living donors must travel more than 3 hours to their recipient's transplant center, first for the donor workup and later for the donor surgery. Not only is this a major inconvenience for the donor but it is painful and unsafe for donors to travel immediately after surgery. As a result, many donors must stay at hotels in distant cities following kidney donation to allow for appropriate recovery before they travel home. These extended hotel stays, if not reimbursed by the recipient, cost the donor money and separate the donor from their family and support network when that support is needed the most. Donor Care Network centers of excellence provide remote donor workups (so donors do not need to travel to the recipient center for the workup) and can safely ship kidneys between centers (the way it is done in kidney swaps), eliminating the need for remote donors to travel if they are near a Donor Care Network center of excellence.

Paper based donor screening and medical history data collection is inconvenient for donors. To make matters worse, many potential donors are required to provide medical history multiple times during the intake process. The Donor Care Network has eliminated this problem and provides for online donor screening so that potential donors can determine within five minutes if they are medically qualified to donate and which centers of excellence will accept them as donor candidates. Once the screening process is completed, the Donor Care Network provides for comprehensive online medical history data collection. Once the donor completes the medical history, the data is electronically transferred to the center of excellence chosen by the potential donor. This online medical history process eliminates the need for multiple paper based medical history data collection, saving potential donors time and aggravation. It also allows for a more effective initial telephone interview with the transplant center because the potential donor’s comprehensive medical history can be reviewed by the center before the interview.

We want to hear from all donors to understand what can be improved to make the donation process safer and more convenient. If you have feedback, please go to the feedback link on the home page and provide us with your feedback. Individual feedback will be aggregated and used to inform transplants centers on areas that can be improved.

Donor Care Network centers of excellence have been selectively chosen. Each center of excellence is committed to sharing and adopting best practices that will improve the donation process. Conference calls are organized periodically, along with informal call, to discuss the more challenging and controversial topics that benefit from multiple perspectives. Examples of the topics being discussed include:

  • What is the best approach to post surgery pain medication that minimizes donor pain but maximizes speed of recovery?
  • What is the best way to determine the discharge date?
  • What is the best way to assist donors with pain & problem remedies after discharge?
  • What is the best physical organization of the donor clinic?
  • What is the best way to maximize caretaker comfort & convenience?
  • What is the best way to consistently prevent the donor from being billed?
  • What is the best way to organize the basic work-up (guide, map, schedule, transportation, etc.)?
  • Is there a way to eliminate the need for potential donors to lug around a 24 hour urine collection jug?
  • What is the best way to proactively predict an increased risk of donor complication or donor death?
  • What has the most impact on the donor’s perception of the donation experience?
  • What is the best way to get candid and actionable feedback from donors?

The 5 star survey is intended to solicit feedback throughout the donation process so that the centers of excellence can quickly correct any process that needs improvement. The 5 star survey also gives leadership of a center of excellence a donor’s perspective on the performance of the transplant organization. The survey is delivered to the donor via email upon completion of the following key steps in the donation process.

  • Workup
  • Pre-op testing
  • 30 days after surgery

The donor will rate each key employee that they came in contact with during the key steps in the donation process. The survey is designed to take less than 5 minutes to complete and capture unstructured improvement opportunities. The results of the surveys will be aggregated and the aggregate ratings will be shared with key staff supporting the donor process, transplant center leadership and all Donor Care Network centers of excellence (benchmarking).

The Donor Care Network wants to ensure that no donor is asked to pay (either directly or with health insurance) for a post-surgical complication that is a result of the kidney donation. This is why we created the donor protection program. Donor Care Network Centers of Excellence agree to pay for all uncovered donor complications for all donors that undergo donor surgery at the Member Center's Hospital. If you have a complication related to your kidney donation, please speak to the transplant program that performed your surgery.

The current paper based informed consent process is inconvenient for most donors. Donor Care Network centers of excellence will provide informed consent documents to donors that are clear and easy to read. The informed consent documents will be sent in advance of the workup so that donors can leisurely read the documents in the comfort of their homes. The fact that donors can back out at any time will be communicated in the first page of the informed consent package to reduce the stress related to reading and signing what are usually long & complex documents. If a donor does not have email access then the donor will be given the option to receive a hard copy of the informed consent documents via mail in advance of the basic workup.

The majority of donors experience different types of pain and problems after surgery. There is currently no way to gather this information along with the remedies to each pain and problem. There is also no way to quantify the efficacy of the remedies that are being utilized. The survey will be designed to take less than 10 minutes and will propose, in real-time, remedies for any listed pain or problem, based on the effectiveness of these remedies over time as measured by the inference engine (e.g. did Maalox reduce gas pain, if so, how long does it typically take, did physical therapy reduce back pain, if so, how long does it typically take, etc.). The Pain & Problem survey will have the following attributes:

  • Surveys begin 4 hours after completion of the nephrectomy and repeats every 4-8 hours until discharge
  • The donor advocate will fill out the survey on behalf of the patient using a tablet device
  • The first page of the survey will focus on each pain type (e.g. back pain, gas pain, incision, etc. )
    • What is your level of pain from 0-10 for each type identified by the donor
  • The second page of the P&P survey will focus on problems (e.g. insomnia, constipation, anxiety, shakes, etc.)
    • What is the severity of the problem for each problem identified (e.g. minimal, low, medium, high)

The results of the Pain & Problem surveys will be shared with:

  • Donors (prior to surgery so that they know what can be expected)
  • Physicians & nursing staff (real time)
  • Center leadership
  • All centers of excellence (aggregated view)
  • The inference engine that will evaluate the efficacy of each remedy.

The Donor Care Network will provide lifetime follow-up up for all donors that register through the Donor Care Network web site, creating the foundation for a living donor registry to better follow and research the impact of living donation over a donor’s lifetime. This follow-up system will include periodic email surveys and periodic blood tests and urine tests to be completed at labs that are close to the donor’s home or work.