The LGDA recently had the opportunity to speak with Dr. Bryan Sisk, a pediatric hematologist-oncologist and researcher dedicated to improving care for patients with complex lymphatic anomalies (CLAs). In this insightful interview, Dr. Sisk shared his journey, current research projects, and vision for the future of CLA care.
Dr. Sisk is at Washington University at St. Louis and is the co-director of the HHT Center of Excellence and the Vascular Anomalies Center and the director of Research, Bioethics Research Center.
Dr. Sisk’s Journey
Dr. Sisk’s path to specializing in vascular anomalies was unexpected. Initially trained in biochemistry, he discovered a passion for ethics, communication, and healthcare access research during medical school. This led him to focus on improving care for patients with rare diseases, particularly vascular anomalies. He fell in love with the CLA patient population, noting their strong self-advocacy and the challenges they face in the medical system.
Barriers to Care
Dr. Sisk highlighted several challenges CLA patients face, including:
- Misdiagnosis and difficulty finding the correct diagnosis
- Limited access to specialists, especially in rural areas
- Insurance issues and financial constraints
- Lack of coordination between different medical specialties
He emphasized that access to quality care often depends on factors like age, financial resources, and luck, creating significant disparities and inequities.
Current Research Projects
Dr. Sisk is currently working on three main projects:
- CLA Care Companion: An EPIC-based communication tool providing education, patient stories, and wellness check-ins. This tool aims to support newly diagnosed patients and their families by offering tailored information and facilitating communication with their clinical team.
- ChatGPT for CLA Information: Using AI to provide high-quality, disease-specific information to patients and families. This project involves retraining ChatGPT using a curated database of trusted information about CLAs.
- Vascular Anomalies Access Program (VAXS): A web-based resource to help primary care doctors navigate CLA care and connect with specialists. This program aims to bridge the gap between primary care and specialized CLA treatment.
Improving Communication and Trust
Dr. Sisk emphasized the importance of building both competence-based and relation-based trust with patients. He shared two impactful patient stories that shaped his approach to patient care:
- A mother who broke down crying when she realized Dr. Sisk had prepared and learned about her child’s rare condition before their appointment.
- A 70-year-old patient who hadn’t seen a doctor in 24 years due to a negative experience with a previous healthcare provider.
These experiences underscored the importance of empathy, curiosity, and preparation in building trust with patients.
Self-Advocacy and Systemic Change
An important finding from Dr. Sisk’s research is that self-advocacy alone doesn’t significantly improve access to care. He stated:
“We cannot expect that people, that patients and families trying really hard to get the care that they need is going to fix the problems. The system is what has problems.”
This suggests that systemic changes are needed to address barriers, rather than relying solely on patients to navigate complex healthcare systems.
Future Directions
Dr. Sisk’s long-term goal is to ensure that all CLA patients can access the information and care they need. He emphasized:
“My firm belief is that the quality of information and communication you get about your disease and the quality of care you receive should not be determined by luck and income and age.”
He sees potential in leveraging advanced AI technologies to identify patients who might have undiagnosed vascular anomalies and to improve access to care. Dr. Sisk also stressed the importance of collaboration between researchers, patient advocacy groups, and families to identify and address the most pressing needs of the CLA community.
By focusing on patient-centered research and adapting to the evolving needs of the CLA community, Dr. Sisk and his team are working to create a future where high-quality CLA care is accessible to all, regardless of location or resources.
