{"entity":{"id":"b-data-silos","kind":"bottleneck","name":"Data silos","aka":[],"tldr":"Records, scans, genomes and outcomes sit in separate systems that cannot talk. Every patient's experience is lost to the next.","summary":"The overwhelming majority of patients with cancer are treated outside trials, and what happens to them, their genomics, imaging, pathology, treatment, toxicity and outcome, is recorded in electronic records, laboratory systems, PACS archives and registries that are not linked and cannot be queried together. Trial data are shared rarely: after journals required data-sharing statements, individual patient data could actually be obtained for about 1% of the trials studied. Privacy law, consent models, vendor lock-in, unstructured free text, absent common data standards and the lack of any incentive to share mean that the largest source of evidence, routine care, teaches the system almost nothing, and that each institution's AI is trained on its own slice. Interoperability standards (FHIR, mCODE), federated learning, national health data spaces, and consented patient-controlled data are the technical and legal answers; the missing piece is an obligation to contribute.","asOf":"2026-09-08","links":[{"label":"AACR Project GENIE","url":"https://www.aacr.org/professionals/research/aacr-project-genie/"},{"label":"mCODE: Minimal Common Oncology Data Elements","url":"https://mcodeinitiative.org/"},{"label":"European Health Data Space","url":"https://health.ec.europa.eu/ehealth-digital-health-and-care/european-health-data-space_en"},{"label":"Danchev et al., Evaluation of data sharing after implementation of the ICMJE requirement (JAMA Netw Open 2021)","url":"https://doi.org/10.1001/jamanetworkopen.2020.33972"}],"tags":[],"related":["genie","cbioportal","tcga-gdc","cptac","seer","clinicaltrials-gov","idea-multimodal-foundation-model","idea-data-mcode-payment-condition","idea-data-oncology-api-certification","idea-data-national-cancer-data-space","idea-data-donor-card","idea-data-dynamic-consent-app","idea-data-consent-in-the-pathway","idea-data-accredited-tre-network","idea-data-synthetic-companion-datasets","idea-data-open-deidentification-pipeline","idea-data-national-slide-archive","idea-data-automatic-outcome-linkage","idea-data-open-line-of-therapy-algorithms","idea-data-point-of-care-randomisation","idea-data-procurement-open-api-clauses","idea-data-privacy-preserving-linkage-tokens","idea-data-atlas-to-outcome-linkage","idea-data-radiotherapy-dose-repository","idea-data-surgical-video-commons","idea-data-ipd-deposit-enforcement","idea-data-common-biobank-consent-mta","idea-data-cross-border-rare-cancer-pool","idea-data-quality-scorecards","idea-data-structured-radiology-response","idea-moon-universal-sequencing-learning-system"],"cancers":[],"sections":["ai-computation"],"technologies":["cgp","digital-pathology-ai","pathology-foundation-model"],"targets":[],"drugs":[],"companies":["tempus","owkin","bostongene","patient-data-vault","cancer-commons","foundation-medicine","guardant-health"],"institutions":["aacr","nci","broad-institute","mskcc","dana-farber"],"pathways":[],"terms":["real-world-evidence","ngs"],"trials":[],"people":[],"bottlenecks":[],"keyPapers":["paper-danchev-jama-netw-open"],"journals":[],"dependsOn":[],"notes":[],"stage":"data-knowledge","severity":"critical","metrics":[{"label":"Adults with cancer participating in treatment trials, and hence the share of patients whose outcomes systematically feed evidence","value":"~8%","source":"Unger et al., JNCI 2019","url":"https://doi.org/10.1093/jnci/djy221"},{"label":"Trials with ICMJE data-sharing statements whose individual participant data could actually be obtained by requesters","value":"6 of 487 (about 1%)","source":"Danchev et al., JAMA Network Open 2021","url":"https://doi.org/10.1001/jamanetworkopen.2020.33972"}],"causes":["Electronic health records are optimised for billing and documentation, not for structured clinical data capture.","Vendors and institutions treat data as a proprietary asset.","Privacy law and ethics review make linkage across institutions slow and expensive.","Key variables (stage, response, progression, toxicity) are recorded in free text or not at all.","There is no reward, and often a penalty, for sharing data."],"currentEfforts":["AACR Project GENIE pools clinical-grade sequencing and outcomes from more than a dozen cancer centres for open use.","mCODE (Minimal Common Oncology Data Elements) and HL7 FHIR define a common structured oncology data model, now adopted in US regulation for interoperability.","The European Health Data Space Regulation (2025) creates a legal basis for secondary use of health data across the EU, and Health Data Research UK links NHS datasets for research.","The NCI Genomic Data Commons, cBioPortal and CPTAC make research-grade genomic and proteomic data openly available.","Owkin, Tempus, BostonGene and Flatiron apply federated learning or curated real-world datasets across institutions.","Patient-controlled data initiatives (Cancer Commons, Patient Data Vault, Count Me In at the Broad Institute) let patients share their own records for research."],"successLooksLike":"Structured treatment and outcome data are captured for every patient with cancer and linkable across institutions under a standard consent, and a researcher or regulator can answer a comparative effectiveness question in weeks from routine data with results that match randomised trials."},"route":"/bottlenecks/b-data-silos/","neighbours":{"collection":[{"id":"genie","kind":"collection","name":"AACR Project GENIE","route":"/collections/genie/"},{"id":"cbioportal","kind":"collection","name":"cBioPortal for Cancer Genomics","route":"/collections/cbioportal/"},{"id":"clinicaltrials-gov","kind":"collection","name":"ClinicalTrials.gov","route":"/collections/clinicaltrials-gov/"},{"id":"cptac","kind":"collection","name":"CPTAC (Clinical Proteomic Tumor Analysis Consortium)","route":"/collections/cptac/"},{"id":"pancaresurfup","kind":"collection","name":"PanCareSurFup and the European survivor cohorts","route":"/collections/pancaresurfup/"},{"id":"seer","kind":"collection","name":"SEER (Surveillance, Epidemiology, and End Results)","route":"/collections/seer/"},{"id":"tcga-gdc","kind":"collection","name":"TCGA / NCI Genomic Data Commons","route":"/collections/tcga-gdc/"}],"idea":[{"id":"idea-data-donor-card","kind":"idea","name":"A cancer data donor card: patient-controlled donation of records for research","route":"/ideas/idea-data-donor-card/"},{"id":"idea-data-common-biobank-consent-mta","kind":"idea","name":"A common consent and material transfer template for tumour biobanks","route":"/ideas/idea-data-common-biobank-consent-mta/"},{"id":"idea-data-surgical-video-commons","kind":"idea","name":"A consented commons of surgical video linked to pathology and outcomes","route":"/ideas/idea-data-surgical-video-commons/"},{"id":"idea-fund-federated-learning-consortium","kind":"idea","name":"A federated learning consortium of cancer centres that jointly own the models","route":"/ideas/idea-fund-federated-learning-consortium/"},{"id":"idea-moon-federated-rwe-network","kind":"idea","name":"A global federated real-world evidence network at regulatory grade","route":"/ideas/idea-moon-federated-rwe-network/"},{"id":"idea-reg-isotope-supply-observatory","kind":"idea","name":"A global medical isotope supply observatory with forecasts and shortage alerts","route":"/ideas/idea-reg-isotope-supply-observatory/"},{"id":"idea-bio2-rapid-autopsy-commons","kind":"idea","name":"A global rapid tissue donation network for metastatic disease","route":"/ideas/idea-bio2-rapid-autopsy-commons/"},{"id":"idea-tr1-live-trial-slot-api","kind":"idea","name":"A live 'seats available' feed for trial slots, like airline inventory","route":"/ideas/idea-tr1-live-trial-slot-api/"},{"id":"idea-prev-live-stage-dashboard","kind":"idea","name":"A live national dashboard of stage at diagnosis as the scorecard for early detection","route":"/ideas/idea-prev-live-stage-dashboard/"},{"id":"idea-acc-chemo-stockout-early-warning","kind":"idea","name":"A live stock-out map for essential chemotherapy drugs","route":"/ideas/idea-acc-chemo-stockout-early-warning/"},{"id":"idea-acc-portable-treatment-summary","kind":"idea","name":"A machine-readable treatment summary handed to every patient and readable by any hospital","route":"/ideas/idea-acc-portable-treatment-summary/"},{"id":"idea-data-national-cancer-data-space","kind":"idea","name":"A national cancer data space with one legal front door","route":"/ideas/idea-data-national-cancer-data-space/"},{"id":"idea-acc-national-late-effects-registry","kind":"idea","name":"A national late-effects registry linking treatment exposures to outcomes decades later","route":"/ideas/idea-acc-national-late-effects-registry/"},{"id":"idea-data-radiotherapy-dose-repository","kind":"idea","name":"A national repository of radiotherapy dose plans linked to outcomes","route":"/ideas/idea-data-radiotherapy-dose-repository/"},{"id":"idea-data-patient-held-cancer-record","kind":"idea","name":"A patient-held cancer record that travels across providers and borders","route":"/ideas/idea-data-patient-held-cancer-record/"},{"id":"idea-moon-patient-held-cancer-record","kind":"idea","name":"A patient-owned, portable complete cancer record in a standard format","route":"/ideas/idea-moon-patient-held-cancer-record/"},{"id":"idea-data-precompetitive-cancer-foundation-model","kind":"idea","name":"A pre-competitive consortium to train a shared multimodal cancer foundation model","route":"/ideas/idea-data-precompetitive-cancer-foundation-model/"},{"id":"idea-tr2-organoid-matrix-atlas","kind":"idea","name":"A public atlas of drug-pair responses across a thousand patient-derived organoids","route":"/ideas/idea-tr2-organoid-matrix-atlas/"},{"id":"idea-tr1-trial-desert-map","kind":"idea","name":"A public map of trial deserts to steer where new sites open","route":"/ideas/idea-tr1-trial-desert-map/"},{"id":"idea-fund-trial-data-trust","kind":"idea","name":"A single oncology trial data trust with mandatory deposit within eighteen months","route":"/ideas/idea-fund-trial-data-trust/"},{"id":"idea-data-synthetic-companion-datasets","kind":"idea","name":"A synthetic twin of every restricted cancer dataset for code development","route":"/ideas/idea-data-synthetic-companion-datasets/"},{"id":"idea-tnbc-uk-trial-access-and-germline-testing-audit","kind":"idea","name":"A UK audit of trial access and germline testing uptake in triple-negative breast cancer","route":"/ideas/idea-tnbc-uk-trial-access-and-germline-testing-audit/"},{"id":"idea-data-accredited-tre-network","kind":"idea","name":"Accredited trusted research environments with curated cancer tables","route":"/ideas/idea-data-accredited-tre-network/"},{"id":"idea-acc-ambient-ai-documentation-oncology","kind":"idea","name":"Ambient AI note-taking to give oncologists back a day a week","route":"/ideas/idea-acc-ambient-ai-documentation-oncology/"},{"id":"idea-acc-electronic-frailty-index-oncology","kind":"idea","name":"An automatic electronic frailty index inside the oncology record","route":"/ideas/idea-acc-electronic-frailty-index-oncology/"},{"id":"idea-data-paediatric-rwe-consortium","kind":"idea","name":"An international consortium pooling the outcome of every treated child with cancer","route":"/ideas/idea-data-paediatric-rwe-consortium/"},{"id":"idea-reg-net-price-transparency-registry","kind":"idea","name":"An international registry of real (net) cancer drug prices paid by public payers","route":"/ideas/idea-reg-net-price-transparency-registry/"},{"id":"idea-moon-open-pro-data-commons","kind":"idea","name":"An open commons of patient-reported outcome data from cancer trials","route":"/ideas/idea-moon-open-pro-data-commons/"},{"id":"idea-acc-open-oncology-workforce-model","kind":"idea","name":"An open global model of cancer workforce supply and demand by country","route":"/ideas/idea-acc-open-oncology-workforce-model/"},{"id":"idea-data-open-evidence-knowledge-graph","kind":"idea","name":"An open knowledge graph linking trials, results, biomarkers, drugs and recommendations","route":"/ideas/idea-data-open-evidence-knowledge-graph/"},{"id":"idea-bio2-organotropism-atlas","kind":"idea","name":"An organotropism atlas that predicts where a cancer will spread","route":"/ideas/idea-bio2-organotropism-atlas/"},{"id":"idea-cost-real-time-pa-fhir","kind":"idea","name":"Answer prior authorisation requests in seconds from the medical record","route":"/ideas/idea-cost-real-time-pa-fhir/"},{"id":"idea-data-automatic-outcome-linkage","kind":"idea","name":"Automatic weekly linkage of cancer registries to deaths, prescriptions and imaging","route":"/ideas/idea-data-automatic-outcome-linkage/"},{"id":"idea-bio1-multiregion-blocks-default","kind":"idea","name":"Bank three spatially separate tumour blocks from every resection","route":"/ideas/idea-bio1-multiregion-blocks-default/"},{"id":"idea-bio2-survivor-plasma-biobank","kind":"idea","name":"Bank yearly blood from cancer survivors so future tests can be validated","route":"/ideas/idea-bio2-survivor-plasma-biobank/"},{"id":"idea-data-consent-in-the-pathway","kind":"idea","name":"Broad research consent as a routine step of the cancer pathway","route":"/ideas/idea-data-consent-in-the-pathway/"},{"id":"idea-nl-diet-covariates-io-trials","kind":"idea","name":"Capture diet, fibre and antibiotic exposure in every immunotherapy pivotal trial","route":"/ideas/idea-nl-diet-covariates-io-trials/"},{"id":"idea-data-oncology-api-certification","kind":"idea","name":"Certify every oncology software product for a standard bulk data export","route":"/ideas/idea-data-oncology-api-certification/"},{"id":"idea-data-national-slide-archive","kind":"idea","name":"Digitise the nation's pathology slides and link them to outcomes","route":"/ideas/idea-data-national-slide-archive/"},{"id":"idea-tr1-esource-ehr-to-edc","kind":"idea","name":"Direct record-to-database data capture: no manual transcription, no full source 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logged in the record with input hash, version and clinician response","route":"/ideas/idea-data-ai-audit-trail-in-ehr/"},{"id":"idea-data-structured-genomic-reports","kind":"idea","name":"Every tumour genomic report machine-readable and deposited nationally","route":"/ideas/idea-data-structured-genomic-reports/"},{"id":"idea-data-federated-learning-imaging","kind":"idea","name":"Federated training of pathology and radiology models across hospitals","route":"/ideas/idea-data-federated-learning-imaging/"},{"id":"idea-bio1-mandatory-progression-biopsy","kind":"idea","name":"Fund a biopsy at progression, every time, as standard care","route":"/ideas/idea-bio1-mandatory-progression-biopsy/"},{"id":"idea-tr2-data-link-enforcement","kind":"idea","name":"Journals check that data links actually work, and flag papers whose data vanish","route":"/ideas/idea-tr2-data-link-enforcement/"},{"id":"idea-bio2-patient-partnered-rare-commons","kind":"idea","name":"Let patients themselves donate their records and samples for ultra-rare cancers","route":"/ideas/idea-bio2-patient-partnered-rare-commons/"},{"id":"idea-nl-bariatric-cancer-registry-linkage","kind":"idea","name":"Link bariatric and GLP-1 registries to cancer registries in every country that has both","route":"/ideas/idea-nl-bariatric-cancer-registry-linkage/"},{"id":"idea-data-registry-genomics-linkage-programme","kind":"idea","name":"Link every national cancer registry to tumour genomics","route":"/ideas/idea-data-registry-genomics-linkage-programme/"},{"id":"idea-data-atlas-to-outcome-linkage","kind":"idea","name":"Link single-cell and spatial tumour atlases to clinical outcomes","route":"/ideas/idea-data-atlas-to-outcome-linkage/"},{"id":"idea-acc-guideline-concordance-dashboards","kind":"idea","name":"Live guideline-concordance dashboards for every tumour board, generated from the 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certified open-source de-identification pipeline for scans and slides","route":"/ideas/idea-data-open-deidentification-pipeline/"},{"id":"idea-data-cross-border-rare-cancer-pool","kind":"idea","name":"One legal framework for pooling rare cancer data across borders","route":"/ideas/idea-data-cross-border-rare-cancer-pool/"},{"id":"idea-bio1-open-resistance-atlas","kind":"idea","name":"One open atlas of how tumours escape every drug","route":"/ideas/idea-bio1-open-resistance-atlas/"},{"id":"idea-data-registry-in-a-box","kind":"idea","name":"Open-source cancer registry-in-a-box for low-resource settings","route":"/ideas/idea-data-registry-in-a-box/"},{"id":"idea-data-open-line-of-therapy-algorithms","kind":"idea","name":"Open, benchmarked algorithms for lines of therapy and progression from routine data","route":"/ideas/idea-data-open-line-of-therapy-algorithms/"},{"id":"idea-fund-portable-patient-consent","kind":"idea","name":"Patient-held portable consent for reusing samples and data across studies","route":"/ideas/idea-fund-portable-patient-consent/"},{"id":"idea-tr2-failed-trial-ipd-default","kind":"idea","name":"Patient-level data from failed trials becomes open by default after two years","route":"/ideas/idea-tr2-failed-trial-ipd-default/"},{"id":"idea-multimodal-foundation-model","kind":"idea","name":"Patient-level multimodal foundation models for treatment selection","route":"/ideas/idea-multimodal-foundation-model/"},{"id":"idea-data-pro-as-structured-standard","kind":"idea","name":"Patient-reported symptoms captured as standard structured data in every clinic","route":"/ideas/idea-data-pro-as-structured-standard/"},{"id":"idea-bio1-model-patient-matching","kind":"idea","name":"Pick the laboratory model that matches the patient, not the one to hand","route":"/ideas/idea-bio1-model-patient-matching/"},{"id":"idea-data-point-of-care-randomisation","kind":"idea","name":"Point-of-care randomisation built into the oncology 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