How Versiti Turns Data Into A Lifeline For Rare Blood Patients

By John Oncea, Chief Editor, Clinical Tech Leader

Versiti’s blood, diagnostic, and research teams show how a nonprofit uses technology to connect donors to the patients who need them most.

Versiti began in the 1960s as a blood center in Milwaukee, a place where people showed up to give whole blood. Six decades later, it operates six interconnected service lines spanning blood collection, an esoteric diagnostic lab, clinical trial services, medical device testing, a dedicated research institute, and a hemophilia treatment center, all built on the same premise: that blood, studied closely enough, can save the specific person who needs it.

Holding that premise together is a small, centralized IT organization whose job is not to run servers so much as to make sure information moves correctly between all of those pieces. Banu Santebennur, Versiti’s director of clinical and research systems and strategy, describes her team’s function as sitting inside the business rather than beside it. “We are the ones who will say, okay, have you looked at this particular technology?” she said. “We work with them on their strategy, on their business strategy for long-range plans, where we work with them to see where the intersection of technology happens within their long-range planning.”

That intersection is unusually literal at Versiti, because the organization’s entire value proposition depends on connecting a donor’s data to a patient’s outcome, often years apart, and often across systems that were never designed to talk to each other.

Rare Blood, Real Stakes

Most people know two blood classifications: ABO and Rh. Versiti’s research has identified roughly three dozen additional blood group systems, each defined by molecular differences in the sugars on the surface of red blood cells. For patients who receive frequent transfusions, people with sickle cell disease or leukemia, for instance, those lesser-known variants matter enormously. Repeated transfusions sensitize the immune system, and patients can develop antibodies to blood types most donor pools don’t specifically track.

Versiti was among the first blood centers to address this by genetically typing donors rather than relying on serology alone, converting genetic data into precise blood-group profiles that can be matched against patient needs. When a match can’t be found internally, staff work the phones to Versiti’s network of blood centers across the Midwest and Texas. The technology exists to support a very human process: finding the person whose blood can save another person’s life.

That same precision runs through Versiti’s hemophilia treatment center, which serves roughly 1,500 patients across a defined geographic region and, by design, keeps them for life. Santebennur’s team supported the administration of Versiti’s first gene therapy for hemophilia in the past year, a milestone that depended on the same data infrastructure used everywhere else in the organization: clean records, verified identity, and systems that can be trusted with irreversible clinical decisions.

One Organization, Many Risk Profiles

What makes Versiti’s technology strategy distinctive is the sheer range of regulatory environments it has to satisfy simultaneously. The diagnostic lab operates under CLIA rules. The clinical trials group, which runs a commercial institutional review board, a Texas-based kitting subsidiary called Cenetron, and central lab services for sponsors, carries sponsor intellectual property and patient health information side by side. The Blood Research Institute’s bench scientists, by contrast, work at the edge of open-source science, adopting new tools long before anyone else in the organization would consider them.

“The challenge is how do we construct a working and efficient organization that can have all these different levels of risk working together in a way where we still have policies, we still have sufficient security, but then where needed, they still can do what they need to do,” Santebennur said. She calls it a Gordian knot; one she and her team untangle service line by service line rather than trying to force a single security posture across all of them.

A Nonprofit’s Different Math

Versiti’s technology decisions are also shaped by what they aren’t: a venture-funded CRO chasing an EBITDA target. Santebennur spent 13 years in for-profit pharma CROs before joining Versiti, and she’s candid about the adjustment. “Everything seemed so slow to me. Everything seemed inefficient and slow,” she said of her early months. What she came to understand, she added, is that the organization has “speed where it matters”, when a patient’s life is on the line, and deliberately paces itself everywhere else.

That discipline extends to technology purchasing. Versiti’s CIO has made a strategic choice not to be an early adopter, waiting instead for a technology to reach what Santebennur calls a “sweet spot”, established enough to be reliable, cheap enough to be affordable. Whole genome sequencing is the example she points to: once a luxury costing thousands of dollars, now available for a few hundred, and now foundational to Versiti’s rare-disease research.

The organization’s research technology infrastructure, the data cleanup, the semantic layers, the interoperability standards that make AI usable rather than dangerous, is the subject of a companion piece, Inside Versiti’s Data Strategy: Building AI-Ready Research Systems, which digs into how Santebennur’s team is preparing Versiti’s data for the next decade of clinical research.

The Donor Pipeline Is Also A Technology Problem

Versiti’s mission ultimately depends on donors showing up, and that pipeline is under strain. Santebennur points to demographic mismatches between the aging donor base and the patients who most need rare blood types, particularly in communities with higher rates of sickle cell disease. Versiti participates in national research infrastructure, including the NIH’s All of Us Genomic Project and the REDS Program, which links donor and transfusion data across research hubs in the U.S. and Brazil, specifically to make that mismatch visible and, eventually, solvable.

Federal funding volatility has added pressure. Cuts to NIH indirect-cost reimbursements last year hit Versiti’s research funding directly, pushing the organization toward more community outreach to explain, in plain terms, why donations matter. It’s a reminder that even the most sophisticated data infrastructure exists in service of a very old, very simple ask: that someone shows up and rolls up their sleeve.

What Versiti’s Model Suggests For The Industry

For Clinical Tech Leader readers managing technology across fragmented organizations, pharma, biotech, CROs with multiple business lines, Versiti’s approach offers a useful frame. Rather than imposing uniform technology standards across radically different risk environments, Santebennur’s team treats each service line’s technology needs as a negotiation grounded in that group’s actual regulatory exposure and pace of work.

“Success is for the focus workflows that we are working on right now: every measure, every lens is defined, every dimension is defined, every source is identified as the one source of truth,” Santebennur said of her team’s current priorities, a standard that applies as much to a hemophilia patient’s treatment history as it does to a sponsor’s clinical trial dataset.

The through-line, in every service line, is the same: technology at Versiti exists to make sure the right information reaches the right person in time to matter. Everything else – the RFP processes, the security classifications, the careful pacing on AI adoption – is in service of that one goal.