(US & Canada) Dr. Stuart Knechtle, Professor of Surgery at Duke University School of Medicine, speaks with Dr. Anthony Cristillo, Digital Health Partner at Guidehouse, in a video interview about the meaning of data-driven culture in the field of transplantation, the possibilities unlocked by data interoperability, and addressing the challenges associated with disparate data sources.
According to Knechtle, the field of transplantation is deeply rooted in a data-driven culture. Among medical specialties, it stands out as one that regularly relies on detailed outcome and quality data, which is publicly reported and accessible through the Scientific Registry of Transplant Recipients (SRTR). This national database has been instrumental in driving quality improvements and setting standards of care, benefiting both the transplant community and patients. Knechtle notes that this transparency and focus on data are ingrained in the field, setting a benchmark for accountability and continuous improvement.
Speaking about the urgent need to improve data quality and interoperability within transplantation Knechtle says that the industry is on the cusp of a transformation where data can be leveraged to significantly benefit patients and caregivers. He explains that, while a vast amount of patient information is available at transplant centers and national databases, the current landscape often involves individual decision-making for each organ offer and recipient. Knechtle suggests that standardizing practices and performance metrics for surgeons and transplant centers, particularly around organ acceptance, could create a more equitable system.
Further, Knechtle points out that addressing equity issues in transplantation is critical to ensuring all patients in the U.S. have equal access to these life-saving procedures. To achieve this, Knechtle emphasizes the importance of integrating donor information from sources like the United Network for Organ Sharing (UNOS) with data from transplant centers. This integration would allow for a comprehensive view of outcomes and could help centers refine their acceptance criteria. For instance, if an organ rejected by one center, such as Duke, is successfully transplanted elsewhere, this data could provide valuable insights, enabling centers to adjust their practices and avoid missing opportunities to match patients with available organs.
Sharing his thoughts on the complexities of integrating disparate data in transplant care, Knechtle points out the need for more extensive data collection to address equity challenges. He notes that current data collection often begins at the time of a patient’s listing, missing crucial information from earlier stages such as referral and evaluation. To better understand disparities in patient referrals, it is essential to gather data on which patients are referred, which are not, and the factors influencing these decisions.
The evaluation process, which can vary between transplant centers, also requires careful monitoring to provide deeper insights. Knechtle highlights the importance of tracking patients through their evaluation stages to determine when they advance, meet criteria, or exit the process. This approach would offer detailed data on the duration of evaluations across different centers and reveal patterns in referral practices among various demographic groups.
Expanding data collection to cover these earlier steps would address key equity questions currently being explored. Knechtle also emphasizes the need for platforms that integrate financial factors, such as changes in a patient’s insurance, to allow for more effective real-time management. He advocates for systems that not only track patients throughout the transplant journey but also provide accessible and useful information for patients, enhancing long-term data accessibility and improving patient outcomes.
When asked about the complex challenges of managing disparate data, especially when it involves sensitive patient and healthcare information, Knechtle says that ensuring data security and privacy is a priority, necessitating adherence to national data security guidelines, such as FISMA (Federal Information Security Management Act). He suggests that achieving a moderate level of FISMA compliance is required to safeguard patient confidentiality and maintain the integrity of healthcare data.
Stuart J. Knechtle, M.D. is the William R. Kenan, Jr. Professor of Surgery at Duke University School of Medicine and serves as Executive Director of the Duke Transplant Center. He graduated from Princeton University with honors in biochemistry and attended Weill Cornell University School of Medicine for his medical degree. He trained in general surgery at Duke under Dr. David Sabiston, and in transplant surgery at the University of Wisconsin under Dr. Folkert Belzer. He was the inaugural Ray D. Owen Professor of Surgery at the University of Wisconsin and Chief of Liver Transplant. He subsequently moved to Emory University, serving as Transplant Division Chief and Chief of Transplant at Children’s Healthcare of Atlanta. He returned to Duke in 2015, and his research, NIH-funded for over 30 years, studies B cell immunity in transplantation. He is co-editor of Kidney Transplantation: Principles and Practice, and serves on the editorial boards of Annals of Surgery, Frontiers in Transplantation, and as Co-Editor-in-Chief of Transplantation Reviews.
CDO Magazine appreciates Stuart Knechtle for sharing his insights with our global community.