Enforce individual participant data sharing as a condition of publication and funding
Journals and funders already ask trialists to share patient-level data; almost nobody checks. Make it a checked condition with real consequences.
ICMJE requires data-sharing statements, and funders such as the NIH require sharing plans, but audits find that a minority of oncology trials actually make individual participant data available. The proposal is a joint enforcement mechanism: deposit to an accredited repository (Vivli, YODA, Project Data Sphere) within 18 months of primary publication, verified by the journal before publication of any secondary paper, and by funders before any new award.
- Data silos · Records, scans, genomes and outcomes sit in separate systems that cannot talk. Every patient's experience is lost to the next.
- Secrecy and intellectual property block collaboration · Companies with complementary drugs rarely test them together, and data that could answer questions stays locked up.
- Preclinical results do not reproduce · Fewer than half of landmark cancer biology findings reproduce when someone else tries.
Pages like this
not linked directly; found by shared links- IdeaA common consent and material transfer template for tumour biobanks
Shares Secrecy and intellectual property block collaboration, Data silos.
- IdeaA global ledger of negative results and failed compounds with mandatory deposition
Shares Secrecy and intellectual property block collaboration, Preclinical results do not reproduce.
- IdeaAccredited trusted research environments with curated cancer tables
- IdeaPre-register biomarker validation studies the way trials are registered
Shares ClinicalTrials.gov, Preclinical results do not reproduce.
- IdeaMap trial case report forms to the registry standard so trial and routine data join
Shares ClinicalTrials.gov, Data silos.
- IdeaA live 'seats available' feed for trial slots, like airline inventory
Shares ClinicalTrials.gov, Data silos.
- IdeaScoop protection and co-publication norms to reduce academic secrecy
Shares Secrecy and intellectual property block collaboration, Preclinical results do not reproduce.
- IdeaA shared compound library that rare cancer researchers can actually use
Shares ClinicalTrials.gov, Secrecy and intellectual property block collaboration.