Big Tech, Startups Look to Revamp Troubled Organ Donation System

Old guard and upstart tech companies, niche nonprofits, government consulting firms, and university researchers are among the hundreds of organizations and individuals looking to help revamp and modernize the nation’s organ donation and transplant system.

For nearly 40 years, a single nonprofit organization has held the lone federal contract to manage the Organ Procurement and Transplantation Network, a public-private partnership that operates the national organ waiting list and the computer system that matches those patients with newly donated organs.

But legislation signed by President Joe Biden in September (Public Law 118-14) will allow multiple contractors to manage OPTN operations for the first time since its creation in 1984.

The rare opportunity to improve the technology, oversight, and effectiveness of the OPTN system attracted nearly 500 individuals and almost 300 organizations to an informational event earlier this month. More than 300 interested vendors and stakeholders attended a similar event in July.

Tech stalwarts like Microsoft, Google, and Oracle are eyeing the project. A slew of smaller, diverse technology companies are also in the mix. They include companies like Truss, Bloom Works, and Nava, each of which include founders who worked on the Silicon Valley team that rescued the HealthCare.gov website after its infamous launch-date crash in 2013.

Later this fall, the Health Resources and Services Administration plans to solicit bids for the first round of contracts on the OPTN modernization project. The competition will usher in a years-long effort to both stand up new digital technology that better serves the 100,000-plus people on the organ waiting list, while increasing accountability, equity, and efficiency in the way organs are recovered, matched, and transplanted.

“This is a high stakes service that people depend on. It’s literally life or death for many people. And that fits perfectly with our mission and skill set,” said Rohan Bhobe, founder of Nava, a public benefit corporation with 350 employees that helps government clients transition from older, legacy digital systems “to where the software is easy to use, supports needs of the users, and the system is reliable and flexible to change.”

Bhobe expects Nava to pursue OPTN opportunities as a general contractor, working directly with the government and having responsibility for meeting terms of the contract.

Emphasis on Equity

Bloom Works, a female-owned software design company that’s also a public benefit corporation, will likely seek a subcontractor role on the project, said Emily Wright-Moore, the company’s Asheville, N.C.-based co-founder and chief experience officer. She wants the 40-employee company to help make transplant services more accessible to underserved populations, like communities of color.

“It’s very much part of the story for why this is something that I personally want to work on,” Wright-Moore said. “People aren’t being reached the same, equitably, across the country.”

That’s been a frequent criticism of the United Network for Organ Sharing (UNOS), the private nonprofit organization that has managed the OPTN under federal contract since 1986.

The group has also faced scrutiny from lawmakers and patient advocates over its outdated IT system, which has suffered periodic interruptions and caused delays in placing organs. The shortcomings of the technology were documented in a 2021 report by the US Digital Service, a technology unit of the White House.

“When I look at” the current software used to match organs with possible recipients and to send accept-or-refuse offers to transplant surgeons, “it reminds me of the 1980s,” said Nobel Prize-winning Stanford University economist Alvin E. Roth, who studies how kidneys are matched with suitable candidates.

A Senate Finance Committee report in 2022 cited concerns about “inaccurate data being used to place organs” because the UNOS system depends “on staff manually entering hundreds of donor and transplant candidate data points rather than upgrading to systems” that could “transfer data across Electronic Medical Record platforms.”

A Harrowing Experience

Tristan and Jordan Mace, co-founders of the Valeos Transplant Society, experienced that problem firsthand.

In February 2021, Tristan Mace was rushed to the hospital and told his heart was failing, his organs were shutting down, and he needed a heart transplant as soon as possible. When a donor heart was located, the couple’s relief quickly turned to fear when they learned the height and weight of the donor had been incorrectly recorded, and the organ was incompatible.

The error “felt like an area that, with our background in data and technology, could be improved dramatically,” said Tristan Mace, a serial tech entrepreneur and venture capitalist.

His wife, Jordan, who had worked in the marketing side of the tech industry, was equally surprised that she had to hurriedly provide Tristan’s detailed medical history by memory because no single repository for the information existed.

“It existed in my brain. And that’s a scary thing,” she said. “That’s an example of something that we think we can resolve when data is moving freely and safely and securely from point A to point B.”

Although Tristan Mace underwent a successful transplant with a second donor heart, the harrowing experience led the couple to create Valeos, a nonprofit that champions improved data and technology for transplant sector participants.

Valeos is eyeing a potential OPTN contract, Tristan Mace said. The group is collaborating with Oracle Health, which provides technology solutions to the health-care sector.

“Oracle is proud to volunteer our expertise as a design partner to Valeos to help bring their vision to life and hopefully make an impact on the outcomes of patients in need of transplants,” said a recent press statement from Stephanie Trunzo, senior vice president of Oracle Health.

A recent blog on the Oracle website touted the ability of the company’s “Oracle Cloud Infrastructure” data platform to address the technological challenges posed by the OPTN system. The company didn’t respond to requests for comment.

Tristan and Jordan Mace co-founded Valeos Transplant Society after Tristan encountered problems getting a donor heart in 2021.

Photo: Tony Pugh/Bloomberg Law

Modernization

Of the OPTN’s expected $72.5 million operating budget this year, about $6.5 million comes from the federal government. Most of the rest comes from the $868 registration fee that UNOS collects from transplant centers when it adds a patient to the organ waiting list. The group charges additional fees to organ procurement organizations and other entities for providing data, support services, transportation, conferences, and educational materials.

The federal government has extended UNOS’ OPTN management contract until March 29, 2024, as the contracting process plays out.

In a statement to Bloomberg Law, UNOS said it welcomes the first-ever competition for the OPTN contract, and given “the system’s complexity, the lives that depend on it, and our unique level of experience, we believe UNOS should continue to play a critical role in the nation’s organ donation and transplant system.”

The OPTN modernization will focus on five areas: technology; data transparency; governance; operations; and quality improvement and innovation.

The upcoming fall contract “solicitation will seek multiple vendors for distinct functions—including supporting a separate OPTN Board of Directors—to ensure service continuity and increase oversight and accountability,” HRSA said in a statement to Bloomberg Law. Currently, the OPTN and UNOS boards have the same members.

A second round of solicitations is scheduled for spring 2024. Its goal is to find contractors who will use “innovative, best in class approaches to carrying out specific functions, including initial prototyping, testing, scaling, integration, deployment, and adoption support,” the agency said.

Patient Safety

To maintain patient safety, the modernization process will not include a point-in-time transition to a new organ matching system.

“Any new functionality introduced will be intensively tested for usability, security and, most importantly, ensuring it functions effectively for the intended user,” HRSA’s statement said.

Everett Harper, San Francisco-based founder and CEO of Truss, said the 104-employee company is studying possible OPTN opportunities. Its diverse makeup—an African-American CEO and a workforce that’s 53% female and 35% people of color—helps the company design, build, and scale better software, he said.

Roth, the Stanford economist, is closely following the OPTN modernization effort with the hope of using machine-learning algorithms to speed up the donor organ matching process by quickly eliminating dozens of transplant centers that are most likely to reject less-than-perfect organs.

This would give centers more inclined to consider these organs additional time to decide. He said colleagues are already working on these algorithms and, if new regulations were adopted, hospitals could utilize software that would let them quickly decline less-than optimal organs.

“If we could more quickly target surgeons who would accept the organs, we might get fewer” discarded organs, Roth said. “Sometimes speed is important.”