"This system has failed many patients awaiting organ transplants due to the lack of oversight and accountability," says one health system executive.
Leaders at AdventHealth are calling for improvements in the U.S. organ transplant system—the Organ Procurement and Transplantation Network (OPTN), the federal government agency that oversees organ transplants in the country, and the United Network for Organ Sharing (UNOS), the nonprofit organization that manages the organ transplant system under a contract with the OPTN.
The organ transplant system needs to be reformed, Barry Friedman, BSN, executive director of the AdventHealth Transplant Institute, recently testified before the U.S. Senate Finance Committee. "Families in need of life-saving organs have no other choice but to trust the organ transplant system that is in place. This system has failed many patients awaiting organ transplants due to the lack of oversight and accountability. Approximately 23% of kidneys procured from deceased donors are not used and discarded, resulting in preventable deaths. It is our responsibility to address this issue."
Transportation of organs also needs to be improved, he said. "Organ transportation is a process left to federally designated organ procurement organizations (OPOs). Currently, they develop their own relationships with curriers, [and] rely on airlines, charter flights, ground transportation, and federal agencies to facilitate transportation. In many cases, organs must connect from one flight to another, leaving airline personnel responsible for transfers. While anyone can track their Amazon or FedEx package, there is currently no consistent way of tracking life-saving organs. … Currently, there is no requirement for OPOs to use tracking systems. Data availability and transparency are key to improving organ procurement, and UNOS has not proven capable in providing this function."
Also, OPTN technology needs to be updated, Friedman said. "OPTN technology has significant interoperability challenges and lags behind other technology platforms. This contributes to a fractured flow of information between OPOs, donor hospitals, and transplant programs."
UNOS should be taking advantage of electronic medical records at health systems and hospitals, Bobby Nibhanupudy, MD, a transplant surgeon at AdventHealth, told HealthLeaders.
"We need to have more integration of EMRs with the database at UNOS, so we can transfer information more easily. Right now, a lot of information is entered on donors in the hospital EMRs and the database at UNOS. There is also information in EMRs and the UNOS database on outcomes. But a lot of that data is given secondhand through forms that are entered physically. UNOS needs to catch up to the capabilities of EMRs and their interfaces. They just do not have a large enough information technology department, which is probably a financial issue, but it needs to be more robust than it is now," he said.
In addition, UNOS is not effectively screening organ donors so that they can be quickly directed to transplant programs, Friedman said. "UNOS asks centers to voluntarily opt out of certain organs via a filtering process. As a result, OPOs waste valuable time making organ offers to centers that will never accept them. Time wasted equates to prolonged cold ischemic time, and organs not placed resulting in lost organ transplant opportunities. This creates a vicious cycle that disadvantages patients on the wait list."
The shortcomings of UNOS are that the complexities of the organ transplantation system have outgrown some of the abilities of the organization, Nibhanupudy said.
"UNOS has been great responding to the transplant community for many years. But over the past five years, UNOS has become more of an executive board-driven entity rather than listening to the transplant community. This has led to a couple of problems. In information technology, the needs of the transplant community have outgrown the abilities of UNOS. That has hindered the ability of UNOS to respond quickly to what the transplant community needs. Secondly, the executive board driven–approach has led to one-blanket-fits-all allocation changes; and no matter how noble the intent was, it has led to decreased transplants in the state of Florida, organs are not being utilized, and there have been increases in costs for the transportation of organs," he said.
Perspective at UNOS
Before his departure from UNOS at the end of September, former CEO Brian Shepard, told HealthLeaders that the organ transplant system is functioning effectively. "The United States has the largest and most productive organ transplant system in the world. Nobody touches our numbers—we have set records for nine consecutive years. We had 40,000 transplants for the first time last year, which is a number that no other country has come close to meeting. Some of that performance is our size—we are a big country—but if you adjust for population, we are still the largest organ transplant system in the world."
UNOS is committed to having effective technology capabilities, he said. "We have constantly updated our technology, and technology accounts for nearly half of UNOS' budget. We spend almost $30 million a year upgrading, improving, and advancing technology. We are always adding new features to help transplant hospitals do their job better such as providing predictive analytics. We provide screening tools that help them target the right organ to the right candidate faster. So, improving the system is an ongoing and continuous process."
Although UNOS is not in charge of organ transportation, the organization does provide a tracker that OPOs can use, Shepard said.
"We do provide a GPS tracker that folks can choose to use. But there are other commercial trackers that people can use—not everybody uses our tracker. We have a couple of committees—our policies always arise from experts in the field—that are looking at questions such as mandating that everyone uses a tracker or mandating that everyone uses the same tracker so it can be monitored through the same interface. These committees are also considering whether it is OK not to use a tracker when the surgeon is traveling with the organ. So, we have committees looking at how we can make the tracking of organs better."
There is not a conflict of interest in having the OPTN and UNOS share board members, he said. "We look for specific issues to see if there is a certain policy we can adopt or a certain information technology programming plan. I don't see a conflict of interest. We are a mission-based nonprofit whose goal is to increase the number of transplants performed in the United States."
Christopher Cheney is the senior clinical care editor at HealthLeaders.
About 23% of kidneys from deceased donors are not used and discarded, the executive director of the AdventHealth Transplant Institute says.
The United Network for Organ Sharing (UNOS) should be taking advantage of electronic medical records at health systems and hospitals, an AdventHealth transplant surgeon says.