The signing of Bill H.R. 2544, “The Securing the U.S. Organ Procurement and Transplantation Network Act,” marks a historic change for organ transplantation. For the first time in nearly 40 years, the national system will be operated by multiple organizations, inviting a new era for improvement and innovation. This change provides an opportunity to address some of the greatest challenges facing not only the organ transplant system but also the U.S. healthcare system as a whole.
This bipartisan legislation, which received unusual fast-track support from Congress, is a testament to the growing recognition that the organ transplant system needs modernization. With more than 100,000 Americans currently awaiting a life-saving transplant, and thousands more dying each year while waiting, it is clear that the status quo must be improved.
Bill H.R. 2544 renews the new public-private partnership, the Organ Procurement and Transplantation Network (OPTN), which is responsible for overseeing the system’s management and operations. This modernization effort presents both opportunities and challenges.
On the one hand, it creates the potential for increased system performance and expanded innovation. By bringing together multiple organizations with diverse expertise, the OPTN can be more discerning with the system’s management and technologies to improve the transplant process for everyone involved.
On the other hand, it is essential to ensure that the revamped system transition is seamless, patient centric, and equitable. To achieve this, it is essential we focus on the following five key areas:
With multiple organizations involved in the OPTN, it is paramount to ensure that they are working together seamlessly. This will require careful coordination and project management between the different stakeholders and the Health Resources and Services Administration (HRSA). It will also be important to establish clear roles and responsibilities to avoid isolated development and duplication of effort.
- Harness institutional knowledge
Organizations newly involved with the OPTN must build bridges with those with institutional knowledge to ensure a successful transition to a new model of operation. This includes individuals and organizations that have a deep understanding of the system’s complexities and the challenges and opportunities of the proposed transition. By doing so, the OPTN can leverage this expertise to develop an improved system that exceeds the expectations of patients and donors.
- Transparency and accountability
With public funds now being used to support multiple organizations involved in the OPTN, transparency and accountability are critical to the system’s success. The OPTN should regularly provide straightforward performance reports to the public—especially to those patients in need of an organ transplant—and to Congress.
- Data-driven decision-making
Having spent several decades now digitizing and collecting health data, there is no excuse for decision making in medicine that is not data-informed. This is particularly imperative when talking about something as life-or-death as organ transplantation. The OPTN should collect and analyze longitudinal data from all aspects of the system, from end-stage organ disease diagnosis to post-transplant care. This data can be used to identify opportunities for quality improvement and ensure that the system is operating as effectively and efficiently as possible.
At its core, the organ transplant system is about saving, improving, and extending lives. The OPTN must always keep patients at the forefront of its decision-making. This means ensuring that patients have equitable access to transplant, including transplant candidacy and information and resources to make informed decisions about their care. It also means advocating for policies that support patients and their families, both before and after transplantation.
The modernization of the organ transplant system is a multifaceted and challenging undertaking, but we cannot be satisfied with the status quo. The tenets outlined here will go a long way to ensure that this new era is a success for patients, donors, and the nation.
The previous principles of OPTN management and operations were groundbreaking when enacted in 1984, but that was nearly 40 years ago. Bill H.R. 2544 offers a new chance to modernize the system in the AI era, with transformative data analytics, an empowered public-private partnership, and renewed support from HHS.
As a heart transplant recipient less than three years out from quadruple organ failure, and a father of two young children, I’m not just hoping that modernization will save and extend more lives. I’m counting on it.
Photo: lvcandy, Getty Images