And old health network is about to get a shot in the arm
For the first time in decades, the Health and Human Services department plans to shake up an obscure system. It’s the one controlling human organs destined for transplant patients. The Organ Procurement and Transplantation Network serves some 100,000 patients and their families and officials say it’s overdue for modernization. The Federal Drive with Tom Temin got more details from the administrator of the Health Resources and Services Administration, Carole Johnson.
Interview transcript:
Tom Temin And you’re kind of like the small agency does so much that nobody has heard of very often. Do you ever get that feeling?
Carole Johnson Well, we have more and more folks here about us. But yes, we do a lot of work to help get health care to people in underserved and rural communities. And we do things like oversee the organ network.
Tom Temin Yeah. And tell us about this organ network. How does it work? What’s the status of it now? What is it you need to revise here?
Carole Johnson Yeah. So what we’re talking about is that Organ Procurement and Transplantation Network. It’s the network across the country that includes all the transplant facilities and the organ procurement organizations that work with families who are donors and all the labs and all the clinical experts who are involved in transplantation. And it is an entity that comes together to help set policy for organ allocation and then runs the technical systems to get organs to people as quickly as they need them. And we at HRSA oversee that network. And for more than 40 years, it’s been run basically the same way with the same single vendor. And everyone knows that technology has gotten more sophisticated, that our understanding of good governance has gotten better. All of those kinds of things led us in partnership with bipartisan leaders in Congress to say, The moment is right and, frankly, well past time for us to modernize this system and really bring the best in class vendors to deliver for the 100,000 people that are waiting on the organ transplant list.
Tom Temin What are some of the functions or capabilities that you would like to bring to it that it doesn’t have now?
Carole Johnson Well, one of the key things that we wanted to do, and when Congress set this up years ago, it was a much smaller enterprise. And over the decades, what’s happened is that the nonprofit organization that was the vendor for this system and the governing board, that is our federal partner in helping to set allocation policy, the board of directors of those two things were the same people. And that was right for people to suggests there were conflicts of interest, whether real or perceived to suggest that there were other things happening. And it’s just time for those things to be separate and for there to be a clear line of accountability and authority to who the clinical folks are that are helping to really drive the policy here on a stand alone board of directors. Two, as we mentioned before, the technology, you can track your Amazon package, from when it ships from the warehouse to your front door. We don’t do that with organs today. And we need to be able to do that. It’s such a critical resource in such scarcity, and we have to be able to maximize the use of every single person in this country who makes that really lifesaving gift of donation. We owe it to them to have the most sophisticated modern system. And so logistics, technology, governance, that’s what we’re all about, modernization.
Tom Temin And on the question of governance, who decides, well, who sets the policy for who gets what organs? Because I guess the presumption is there might be a hundred people waiting for an organ, but there might be only five available.
Carole Johnson Yeah. So part of what the Organ Procurement and Transport Network is charged with doing is bringing together all the clinical experts to really help define what the criteria are so that there are clear standards in policy and everyone gets treated equitably when it comes to allocation. But they make changes in policy over time as the research gets better, as the clinical knowledge gets better, those kinds of things. And our goal, they have to date, put those out for public comments, gotten public solicitation. But our goal in the Biden-Harris administration is to open that process up more and make sure that patients have more visibility into it, that families and donors have more visibility into it, so that it is as transparent a process as it can possibly be. Because today, sometimes your transplant doc might be offered an organ and pass it up for you because they don’t think it’s exactly the right fit for you. And sometimes that’s what their clinical judgment says. But you may not always know that as a patient. And we want to really make sure patients are part of the decision making as well.
Tom Temin It sounds then like there is some new technology required to be able to give those kinds of tracking and transparency and access capabilities.
Carole Johnson Yeah, we’re investing in better governance, better technology, better logistics. That’s what our whole modernization initiative has been about. We needed to work with Congress to get new authority. And so we’ve got in the fastest time, honestly, I’ve been in health care policy for decades, the fastest legislation I’ve ever seen move. We proposed this in March of last year. Congress introduced legislation soon afterward, and within six months, bipartisan legislation passed, the president signed it. So we have new authority here. And now we’ve been working with Congress, they’ve helped secure us the resources we need. Because building new technology while you’re maintaining the legacy system, because this cannot be a place where you turn one thing off and turn something on. You’ve got to ensure reliability while we get to a better, more modern system.
Tom Temin We were speaking with Carole Johnson. She’s administrator of the Health Resources and Services Administration (HRSA) part of Health and Human Services. And what is the status of the project now? Do you have new contractors? Are they working on it? What’s going on? Who are they?
Carole Johnson We have new contractors, and your audience will know that this is also a thing that can sometimes take time. And we have set some real records in terms of how quickly we’ve been able to move forward here. And that’s because we had bipartisan leadership, that’s because the Biden-Harris administration has made this a priority. So we already have incorporated the board of directors separately from the current vendor, created a new vendor, awarded a new contract for a new vendor to support that board of directors, and have made a series of additional new awards to help do some of the things we’ve talked about in terms of the discovery work on IT development and modernization and the like. And so we’re well on our way, and we will in the near future do some of the big contracting around the IT development. So this is a huge priority for us and we are leaning in as hard as we can.
Tom Temin So what is the new contractor actually doing then? Because you haven’t embarked on the tech upgrades yet?
Carole Johnson Well, one of our critical new contractors is about supporting the new board of directors. And so they will actually have a new election for a new set of members for the board of directors to govern the system. Because, again, as we were talking about, the old system was just sort of an old way of governance. And we really want to open up the board of directors to making sure that we have the patient voice as part of that, that we have all the right clinical expertise and that it’s not just legacy members. And so one of our contractors is about supporting that board. And that means everything from the logistics of the board to the ensuring that we’re all of our governance document, paperwork and the like is well documented. But we also, through the OPTN, also through all the safety work around the transplant network, and that is about making sure that systems are up to speed, and that if there are safety issues or even concerns about safety issues, that there are peer to peer reviews of that. And so there’s a lot that goes into making this system work. And we are committed to each of those functions being best in class rather than having a single vendor who sort of runs it all and has to try to be best in class in a multiple different things. And that has not proven to be as effective as we would like it to be. All of this for us is centered around the patient.
Tom Temin And the new vendor, who is it? Is it a commercial type of entity or is it also a nonprofit?
Carole Johnson So we’ve made we’ve made multiple awards. The first award we made was to the American Institute for Research, which is the new vendor, a nonprofit organization, new vendor to support the board of directors. And then we made a series of awards for other functions around supporting governance, around supporting financial management, around supporting IT and the like. And the IT work thus far is really about scoping out the discovery part of the modernization. And we will very soon do the bigger piece of the rebuild.
Tom Temin Right. So you’re developing requirements now, in other words.
Carole Johnson That’s right.
Tom Temin And will that be a full and open or will you go through a task order? How big a job is this network?
Carole Johnson So step one was an IDIQ for multiple vendors. And what we intend to do is a competition that’s broadly open for the future. We have had multiple industry days. We have had hundreds of people attending our industry days to help both inform us and to be informed by us in what we intend to do here.
Tom Temin And what’s your vision for, say, a patient who is waiting for an organ? What will they be able to log on and do?
Carole Johnson Well, one thing we want to make sure of is that the reliability of the system is as strong as it can possibly be. There have unfortunately been some disruptions in system continuity that is something that you can sustain in this system. There’s a life saving system needs to be 24/7. And so we want the system to be reliable and efficient. We want it to provide as much information as it can, as quickly as you can to clinicians. We want patients to be able to track their journey as well. And one of the other things we want to be able to work on is what folks in the community sort of called pre waitlist patients. Like there are people who are on dialysis or otherwise getting care and services that might need to be on the waitlist by their physician, or their collision has referred them because of some barriers to care or the fact that they have some limitations that make it raise concerns about getting. And so we want to get a better picture on what the pre waitlist community looks like and how we get those folks to transplant who need it as quickly as we can.
Tom Temin Right. It sounds like this is primarily kidneys. Is that the bulk of the organs that are sought?
Carole Johnson Kidneys, livers and hearts are sort of the big. But there’s eyes and other things that get donated as well. But like kidneys, livers and hearts are some of the biggest movers here.
Tom Temin But someone waiting for whatever organ with this new network, they would have a better idea of when one might become available that’s compatible, and whether they’re eligible.
Carole Johnson That’s our goal. We have lots of data, and we want that data to be user friendly and understandable by families and patients who are waiting on a kidney. We also want the system to be as trustworthy and open as possible so more and more people will make that life saving decision to donate.
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