Situated in downtown Richmond is an organization with a heart that never misses a beat. The United Network for Organ Sharing (UNOS) is a private nonprofit that manages the country’s organ transplant system, and it has a call center that even in a global pandemic has remained essential to “matching organs and saving lives.”
From the 1950s to the early 1970s, organ recovery and transplantation was segmented and siloed, with individual hospitals and organ procurement organizations (OPOs) informally sharing organs with others in the area. According to its website, before UNOS came into existence, if an organ couldn’t be used at hospitals local to a donor, there was no system in place to find other suitable candidates – which means organs couldn’t be used and were ultimately discarded.
Thankfully, a national system was created in the 1980s, and now as many as eight lives can be saved thanks to one single organ donor.
The bones: UNOS’ history and foundation
In 1977, the South-Eastern Organ Procurement Foundation (SEOPF) created a database to add efficiency to the organ placement process by organizing digital databases for institutions to use to help place organs that they couldn’t place locally.
The name for this database? The United Network for Organ Sharing.
In 1982 SEOPF opened a 24/7 call center, and in 1984, UNOS was incorporated as its own nonprofit organization.
Also in 1984, Congress passed the National Organ Transplant Act, which called for a national network to coordinate the allocation of organs from deceased donors for transplantation and named it the Organ Procurement and Transplantation Network (OPTN). The legislation also provided a regulatory framework for the OPTN’s operations, and it required a nonprofit to operate as a contractor to do the groundwork on behalf of the Health Resources and Services Administration within the U.S. Department of Health and Human Services. UNOS was first awarded that contract in 1986, and to this day, it has been the only nonprofit to hold it.
The brains: The data and science behind decision-making
When it comes to life and death decisions, you can only imagine the data and brain power that goes into decision making. Among the many departments and teams that help run the daily operations at UNOS, you can look to research and information technology as an initiation point and launching point for a lot of the work.
Within the transplant system, UNOS is a little bit like a project manager. It helps house and organize all the data and information as it relates to transplantation – from the obvious things like wait-list times all the way down to patient and demographic data that can be used to make trends analysis projections that help feed a constant improvement process.
Data scientists analyze, map, predict and interpret the data to help inform policy and governance decisions. To summarize: A very complicated, multi-month (and in many cases, multi-year) process, policy is formed and implemented into the information technology systems in place that help organs make their way from hospital to hospital, donor to recipient.
The heart: The people who keep operations going 24/7/365
Part of that complicated process to turn data into technological solutions are several other departments that help keep UNOS running every minute of every day.
In addition to the call center that never shuts down, there is an entire policy department that supports committees made up of volunteers – organ donation and transplantation professionals and patient representatives from around the country – in shaping policies that govern when, where and how organs are allocated.
UNOS CEO Brian Shepard’s TEDxRVA talk reveals what it means to develop policy in this space. Policy development isn’t linear. It combines so many different factors, like wait time, medical urgency and biological factors to help make the most beneficial decisions possible. And because the human body is a strange place, organs react differently out of the body, which also affects transplantation policy.
“Even if you think you’ve figured out how best to do this for one organ, you look at the others and you realize the balance will be different for them all,” Shepard said to the TEDxRVA audience.
(For a better sense of how UNOS helps match organs, read up on it here.)
Then once these policy puzzle pieces are put together, there are departments like member quality, professional education and communications who work with the transplant community to make sure there is an ongoing understanding on policy changes.
The lungs: Leadership and community support
UNOS unites the transplant community in the United States.
Hundreds of community volunteers across the country serve in leadership positions on committees and the board of directors that help guide the entire organ allocation process.
Similar to other governing structures, these committee members are advocates for their particular specificality – for example, a liver surgeon may serve on the liver committee, but they could also serve on the pediatric committee that is specifically focused on pediatric transplantation.
Last, but certainly not least, are the people behind organ donation and the patients who receive an organ. As you can imagine, families who are affected by this work – whether through a donation or transplantation – also serve as community advocates for the value and work surrounding organ donation and transplantation.
Many of us may have that little heart on our license to signal that we’re an organ donor. If you haven’t yet signed up to be a donor, go to unos.org to learn more about transplantation and register now.
And, if you’re ever in Richmond, consider making a pit stop by UNOS’ headquarters in the Jackson Ward neighborhood. Directly in front of its building is the National Donor Memorial, with hundreds of names of donors who saved the lives of others. As you walk through, remember the lives lost, but also remember all the lives impacted and saved because of the gift of life.
A patient is added every 10 minutes to the waiting list. To learn more about UNOS and the work it does, visit its website or donate directly here.