A pivotal moment for the organ donation and transplant community
McBride addresses public concerns, calls for collaboration and shares vision for the future
This morning, I delivered remarks before the Organ Procurement and Transplantation Network (OPTN) Board of Directors in St. Louis during our semi-annual meeting. In them, I outlined my vision for community-wide efforts in the days, weeks, and months to come. I discussed critical issues facing the national system and how we can move forward together, acknowledging where we must improve, challenges we must address, and opportunities we must identify to best serve patients.
Following are my full remarks.
“Our national donation and transplant system saves thousands of people’s lives every year. But as long as there are patients on the waiting list, there is more we need to do.”
Maureen McBride, Ph.D., Interim CEO
Good morning, I am pleased to be with you today. After two months as the interim executive director of the OPTN, I am eager to talk to you all about my vision for the future of our national system at a most challenging time.
In our roles as part of the OPTN, we are responsible for collaborating, improving, and driving success. It is a unique privilege to be in these positions, and I know that we all feel that sense of duty and that call to be of service.
Many of you knew me before I stepped into this role. I am a biostatistician by background and I have been with UNOS since 1995. Most recently, I served as the chief operating officer until I accepted the role of interim CEO. I have had the opportunity to speak one-to-one with most of you over the last couple of months, and I appreciate your generosity with your time.
Making the donation and transplant system better has been and continues to be my passion—it is why I come to work every day and it is why I am here in this role with you today.
We all share a common mission: saving patients’ lives by equitably and efficiently getting as many organs as possible to the patients who need them.
Our national donation and transplant system saves thousands of people’s lives every year, but as long as there are patients on the waiting list, there is more we need to do.
Our critics agree—they have been vocal. Our supporters, too, have offered constructive feedback, and many of you have let us know your feelings, shared your ideas and outlined challenges.
I am here today to say that we are listening to all of these concerns. Here is where we all agree: we can do better, we must do better, and we will do better.
Now is the time to systematically address and fix concerns in a wide variety of areas. These include: doing more to increase utilization of the gift of life while also ensuring the safe and efficient transport of donor organs; taking an even broader look at equity in access to transplant that extends beyond the waitlist; improving oversight not only by reviewing our own practices, but by also coordinating with the federal government; and, of central concern, is improving how we meaningfully serve patients.
I know we have the experience and the knowledge required to address these challenges, and that work has already started.
Today you will be hearing about just a few of the projects already underway, with the goal of rolling out additional plans and recommendations for immediate actions based on the feedback you provide.
The donation and transplant network that we are all a part of does a lot of things right, but it is also true that we have room for improvement.
It is clear that each year, too many donated kidneys never find a recipient, and that number is growing. This is unacceptable. From implementing recommendations from the National Kidney Foundation Consensus Conference to Decrease Kidney Discards to the OPTN offer acceptance collaborative, this board has helped develop meaningful solutions to address this issue.
We agree though, that it is not enough, and it is time we do more. We need to look at ways to increase the utilization of older and more complex donor organs, and I am looking forward to your input on this.
Organ utilization is intrinsically tied to the transport of organs. That is why today we are going to have a collaborative conversation about how the community can answer the public’s call for assurances that these precious gifts of life are delivered safely and efficiently to their destination.
Today you will hear from some of our OPO board colleagues about the specific challenges they experience.
Then, we are going to ask all of you to prioritize potential solutions for how the OPTN can fix these problems. That includes advocating as a community for federal level solutions. Practical, logistical, and regulatory obstacles to the safe and efficient delivery of donor organs should be identified, remedied, and monitored.
Like transportation, equity in access to transplants remains a critical concern of the OPTN, Congress, patients, donor families, advocacy organizations and others.
For its part, this body does not need reminding that the OPTN has access to a relatively rich source of data on waitlisted patients that, in combination with the collective expertise and perspective of its volunteers, enable us to quickly make adjustments to allocation to improve equity.
In fact, a recent HRSA-funded study conducted by the OPTN confirmed what you already well know: social determinants of health, including access to health care, education attainment, civic engagement, economic stability, and an individual’s neighborhood and environment were associated with waitlist outcomes.
I also do not need to remind you that a substantial body of research shows that for so many patients access to the waitlist is far from equitable.
My vision for the future includes the OPTN serving as the engine driving this critical public health conversation forward. I am committed to seeking HRSA’s continued support for access to the data. We need to accelerate the development of this body of work—a body of work that can serve as a foundation for new interventions, public policy, programs, and more.
In my view, it is time for us to take bigger, bolder steps to increase equity across the entire donation and transplant landscape, not just one part.
With a system as interdependent as ours, efforts to improve must extend to each and every player in the donation and transplantation community. We will work to continuously improve the system so many Americans rely on today.
This is important, and how we measure matters.
The Membership and Professional Standards Committee has held detailed conversations following the Senate Committee on Finance hearing about reviewing and enhancing its monitoring processes. They are implementing a suite of patient-focused, data-driven metrics for transplant programs that were recently approved by the OPTN. As you will hear from Dr. Stewart-Lewis today, we will soon embark on the same for organ procurement organizations.
Improvement and oversight cannot stop there.
There are ongoing congressional efforts to increase oversight and improve the system. In August, the Senate Committee on Finance stated, “Everybody wants this system to work with as few errors as possible.” We completely agree.
We have a unique role in the nation’s donation and transplant system, but there are so many others invested in this system.
My vision for the OPTN is one in which we work alongside, closely and collaboratively, with members of Congress, HHS, HRSA, CMS and others in the federal government to do the hard work of driving change and instituting substantive reforms.
We also hear questions about the status of OPTN technology. This was a centerpiece of the Senate Committee on Finance’s work.
We know there are significant concerns about the technology that powers the OPTN. We stand ready to alleviate those concerns, serve as a resource and engage in one-on-one conversations to provide assurances to HHS and Congress, patients, and the public that our systems remain secure and effective.
We cannot, however, ever be satisfied with the status quo. Our IT systems can and must always improve and evolve. The patients who rely on this system deserve a constantly improving technological infrastructure that they can trust.
While we strive to serve patients, we have also heard that many feel disregarded. Patients, donors, and their families tell us that they want to be part of the solutions, but they do not feel heard and supported. I have heard first-hand from many of you on this very board that you feel ignored—like your ideas are not valued and your input is not viewed as important.
This is unacceptable. As our patient volunteers, you have given of your time and expertise, and you want more meaningful engagement and involvement in how we develop policy and determine priorities for the OPTN.
We have been working to increase patient representation on our committees. For those of you who are already participating, we will commit to ensure you have the support you need to make a meaningful contribution and that you feel you are heard and valued.
For patients not yet involved in the OPTN policy process, I have heard that they want easy-to-access information – content and resources that will help them on their transplant journey. These patients are looking for more comprehensive, meaningful information to help them or their loved ones. Work already is underway to offer more educational resources to meet those needs.
I look forward to discussing these efforts with you in the coming weeks and months.
With all of this in mind, today you will hear from different presenters on a wide variety of strategic initiatives. Each is focused on efforts to improve and build upon our national system in a way that is responsive to the community, the public, and you.
Our critics express legitimate concerns, and truth be told, we have heard those points loud and clear. We take them seriously.
Many of those concerns align with our own internal belief that we must strive to be better, to do better, and serve this community and the nation’s patients and their families better.
So today, I am calling on everyone in this room, and everyone watching virtually, to work with me to make these changes. To take them from words on a page to a concrete reality for patients in need and to hold me accountable to these goals.
I am new to the role of Executive Director and I believe it is a new day for the OPTN. I would like to personally thank HRSA for being here today and for being our longtime partner in the ongoing effort to save lives and serve patients.
To each of you, engagement across this entire Board must evolve. I am proud to have started more direct, one-on-one conversations with OPTN board members. I appreciate the candid assessments you have shared with me and my team. I ask that you continue to provide your honest feedback and bold solutions. I am committed to building trust within this body and to continuing to listen to your concerns.
I hope you notice some meaningful changes in the way this meeting runs today. We have tried to find more time for discussion and dialogue throughout the day, and our session on transportation will be an opportunity for you to break out into small groups to do some brainstorming.
In addition to our three policy discussion items, you will also be hearing an update from HRSA and important reports from the operating committees. These include Policy Oversight, Membership and Professional Standards, Finance, Nominating, Data Advisory, and Executive, and updates from the Living Donor and Operations and Safety committees.
We will also hear about a decision support tool that will be incorporated into the system early next year. This will enable all adult kidney transplant programs to evaluate organ offers through predictive analytic data.
This promises to be a day full of engaging topics, and I hope you will take the opportunity to participate in the discussion.
As I mentioned at the beginning of my remarks, we are privileged to be here—to serve on this board and to be able to use our experiences and expertise to serve patients across the nation. All of us have worked very hard to drive significant progress to date and we all are committed to doing even more.
This is our profound responsibility—one we can never take lightly.