Lori Trahan Questions UNOS on Organ Transplant Data Access and System Control

Concerns Over Organ Transplant System Chaos

• ⚠️ The current organ donation and transplantation system is described as being in a state of chaos, with numerous adverse events and patient safety concerns.
• 🚨 Issues include patients being skipped on waiting lists, donor cases raising troubling questions, and instances of patients showing signs of consciousness during donation preparation.
• ⏱️ Families and doctors report feeling rushed and pressured, impacting the trust and integrity of the system.

Government Access to Transplant Data

• 🏛️ Representative Lori Trahan highlights that the federal government, specifically HERSA, has reportedly lacked full access to the computer systems running the organ transplant network for years.
• 📊 This includes the code that makes matches and stores patient data, preventing a clear view into system operations and risks.
• 💰 There are concerns that UNOS (United Network for Organ Sharing) may be holding system code and data "hostage," potentially demanding compensation to grant access to taxpayer-funded technology.

Modernizing the OPTN System

• 💻 Dr. Lynch confirms that HERSA is working to ensure full access to the necessary data and systems for the transition to a multi-vendor environment.
• 🤝 The goal is to provide contractors with access to government data, which belongs to taxpayers, while protecting patient privacy and ensuring continuity of care.
• 🚧 Obtaining complete compliance from the legacy contractor (UNOS) for this transition is an ongoing area of work.

Accountability and Patient Safety

• 🔒 Secure and uninterrupted access to the OPTN's technology, code, and data is deemed non-negotiable for trust, accountability, and patient safety.
• ✅ Dr. Lynch affirmed that UNOS has, to her knowledge, obstructed or delayed government access and demanded compensation for turning over code and data.