Overview
Building on recent discussions, NCI's Office of Data Sharing in partnership with the Childhood Cancer Data Initiative is convening leaders from across cancer care, research, technology, policy, and patient advocacy communities to explore a fundamental question:
What authoritative framework can be established to allow patients to document desire and intent for their biospecimens and health data—collected in the course of care—to be shared broadly and used for cancer research?
When: December 2 & 3, 2026 9:00 am - 4:00 pm ET
Where: NIH Main Campus, Building 31, Bethesda, MD (and online)
In-person space is limited, please make your request to join us, via registering, by November 13th, confirmation for in person attendance will be sent no later than November 18th.
Through interactive discussion, we will explore what is needed to make patient direction meaningful and scalable, while building a more connected ecosystem capable of learning comprehensively from every patient. Specifically, we are seeking to outline ways that patient-directed intent for sharing data and specimens can help overcome institutional, clinical care and research barriers and what changes are needed in regulatory or policy authorities, consent or directives for research, data governance and stewardship, technical infrastructure, and reciprocity of impactful knowledge exchange to realize the goal of building a learning health system for cancer. Topics will include:
- Patient directives for the broad and open research use of biospecimens and health data collected at the time of clinical care;
- A National Strategy of Characterization defining how optimal diagnostic characterization will be readily available for every patient to ensure the evidence-based treatment decisions,
- Regulatory frameworks governing technology and AI in cancer treatment and research; through systems that enable data, biospecimens, and knowledge to move across institutional boundaries; and
- Non-traditional data sources, including wearables and patient-reported outcomes, to create a more complete picture of each patient.
We look forward to engaging with you on these wide-reaching topics.