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Current EHR systems and SEER data collection do not capture when a patient's cancer recurs or progresses to become metastatic. Thus statistics do not accurately capture risk of metastatic disease.
Acknowledge patients are owners of their own bodily specimens, allow them to access those specimens as needed for testing and diagnosis, and let them decide with whom to share their specimens
Increase funding and research focus into what causes cancer to become metastatic. Create NCI working group and SPOREs for metastatic cancer and research metastases across solid tumor types.
To accelerate cancer research, we need to break down data silos and permit open access to data. Instead of rewarding researchers for being first to gather AND report on data, reward them for generating high-quality data, as well as analyzing data
Provide incentives for healthcare providers and facilities to recommend authoritative online information resources to their patients to reduce costs and increase patient engagement
Create "clinical trial finder" regional centers staffed with healthcare personnel trained to help patients assess best clinical trial option anywhere in US--not only identify trials, but choose best trial option and together with patient
Train doctors at community-based hospitals to act as local "hands-on" clinical trial check-in locations so trials for rare and oncogene-driven cancers will increase accrual (and more patients will have access)