Senior health experts have called for the federal government to separate the technology and policy arms of the nonprofit responsible for operating the U.S. national organ transplant network, citing concerns over its failure to modernize IT systems, including a key software component called DonorNet.
Splitting the Organ Procurement and Transplantation Network (OPTN) contract, which United Network for Organ Sharing (UNOS) has won for 36 years, into two contracts covering IT requirements and regulatory responsibilities would end a monopoly disincentivizing regular system updates, experts say.
DonorNet is a component of UNOS’s organ-patient matching system, which is known as UNet. DonorNet is designed to allow organ procurement organizations (OPOs) to input health data on donors and match organs to them.
“I don’t think a monopoly is really serving us well, so I do think we need to split up. And I think we need to engage experts. There are experts that exist for a reason, and I think UNOS very much has tried to do everything and ended up being the master of nothing. And that’s a real problem for our patients,” Dr. Jayme Locke, director of the Department of Transplantation at the University of Alabama Heersink School of Medicine, told FedScoop at a Senate hearing Wednesday.
Testifying at the hearing, Diane Brockmeier, president and CEO of Mid-America Transplant, said: “Patients deserve a transparent, accountable system that works on their behalf. To protect patients, I urge Congress and the administration to separate the OPTN functions into different contracts so that patients can be served by best-in-class vendors.”
Executive Director of AdventHealth Transplant Institute Barry Friedman also warned of a “conflict of interest” related to the management of IT functions by UNOS.
“[T]he IT tools they offer transplant centers come with additional costs — despite these being essential for the safety and management of organs,” he said in testimony.
The experts’ comments follow a draft U.S. Digital Service report, obtained by The Washington Post, concluding that UNOS lacks the technical capability to modernize UNet, which was launched in 1999. UNOS disputes the report’s findings, but multiple witnesses representing the donation and transplant community at Wednesday’s Senate Finance Committee hearing on OPTN recounted voicing problems with DonorNet — the part of UNet that organ procurement organizations (OPOs) use to input health data on donors and match organs to them.
“The consistent response was UNOS IT did not have the bandwidth to address this work,” Brockmeier added in testimony to lawmakers. “The limitations of the UNOS technology are delaying and denying transplants to patients that are dying on the waitlist.”
Nowhere is that more apparent than with the U.S.’s “disturbingly” high one-in-four kidney discard rate, Brockmeier added.
Algorithms a cause for concern
The approximately 8,000 kidneys that weren’t transplanted in 2021 were victims of UNOS’s “entrenched and cumbersome” algorithms for allocating organs, said Dr. Jayme Locke, director of the Division of Transplantation at Heersink School of Medicine.
“You have to go sort of in order when data clearly have shown that introduction of multiple, simultaneous expiring offers would result in more efficient placement of kidneys,” Locke said. “And this would decrease our cold ischemia time.”
Locke told FedScoop she doubts UNOS consults with applied mathematics experts, like the National Kidney Registry did, to optimize its matching algorithms and echoed Brockmeier that the nonprofit’s IT team frequently cited a lack of bandwidth, when it took years to add data fields for unacceptable antigens to place kidneys faster nearly a decade ago.
UNOS has a team of Ph.D. statisticians and another Health Resources and Services Administration contractor statistically models proposed organ allocation policies for OPTN to choose from, said CEO Brian Shepard in an interview.
“That kind of advanced math has always been a standard part of our organization and of our process,” Shepard said.
UNOS IT has about 40 software engineers and testers and 150 operations, customer advocacy and information security staff helping align algorithms with changing organ allocation policies proposed by public-private OPTN committees and approved by its board of directors. The team also develops new features and tools based on the needs of the donation and transplant community.
While UNet is required under UNOS’s OPTN contract, the organ shipment GPS trackers the nonprofit piloted and the organ transportation logistics application it’s developing for OPOs and transplant centers are not.
“The transplant community promoted the use of GPS tracking for organ shipments, and UNOS piloted an organ tracking system,” said Barry Friedman, executive director of AdventHealth Transplant Institute, during the hearing. “This system was not dependable, therefore we opted out, and now we’re working with a company that uses less-expensive, higher-quality trackers and can monitor shipments in real-time.”
Greater IT expertise required
Friedman expressed disappointment there’s no requirement for OPOs and transplant centers to use GPS tracking of any kind, which the OPTN board could vote on after a public comment period. A quarter of OPOs, around 15, use UNOS’s vendor-agnostic GPS tracking service, Shepard said.
Hearing witnesses further criticized the UNOS Organ Center’s rigid system for finding flights for organs. In one instance an organ was rescued from being left to rot in a cargo hold overnight because the center opted for a direct flight from San Francisco to Birmingham, Alabama, rather than an earlier flight to Atlanta, from where the organ could have been driven, according to Locke.
A team of IT experts overseen by OPTN would be preferable, she said.
UNOS is working on a new Offer Filters project that analyzes transplant hospitals’ organ acceptance patterns over the last two years in order to suggest ones they’re likely to accept and flag those they aren’t.
“There’s always a longer list of things to do than there is money to do them,” Shepard told FedScoop.
The Senate Finance Committee plans to continue its two-and-a-half-year investigation of OPTN by examining the roles of federal agencies like HRSA, which oversees the system, and the Centers for Medicare & Medicaid Services.
HRSA’s OPTN contract is up for renewal in 2023.
“The federal contract that UNOS has had for decades is up for renewal, and this is an opportunity to fix things,” said Sen. Ron Wyden, D-Oregon, to end the hearing. “And on this committee, in a bipartisan way, we are determined not to miss this opportunity to get this fixed.”
Breaking the OPTN contract up could make it harder for IT staff tasked with developing solutions to engage with the doctors and patients on its policy committees throughout the process, Shepard said.
But it’s not a dealbreaker for UNOS either.
“We certainly would bid on the tech piece of the contract, whether it was integrated into the policy piece of the contract or not,” Shepard said. “We do think there are real advantages to seamless, integrated communication between the software engineering groups and the policy writing groups.”