{"entity":{"id":"idea-data-access-programme-outcomes","kind":"idea","name":"One outcome record for every donated or discounted cancer drug pack","aka":[],"tldr":"Companies and charities give or discount cancer drugs in poorer countries, but nobody records whether the patients did well. Make a simple outcome record part of every programme.","summary":"Access programmes (donations, tiered pricing, patient assistance) treat hundreds of thousands of patients in low- and middle-income countries with no systematic outcome data, so we cannot tell whether treatments developed in high-income trials work under different conditions of nutrition, comorbidity, diagnostics and supportive care. The proposal makes a minimal outcome record (diagnosis, stage, treatment, vital status at 12 months) a condition of participation, captured via mobile registry tools and pooled by a neutral steward.","asOf":"2026-09-08","links":[{"label":"Bottleneck evidence (Weak real-world evidence and registries): Gyawali, Hey & Kesselheim, Assessment of the clinical benefit of cancer drugs receiving accelerated approval (JAMA Intern Med 2019)","url":"https://doi.org/10.1001/jamainternmed.2019.0462"}],"tags":[],"related":["idea-data-registry-in-a-box"],"cancers":[],"sections":["ai-computation"],"technologies":[],"targets":[],"drugs":[],"companies":[],"institutions":[],"pathways":[],"terms":["real-world-evidence"],"trials":[],"people":[],"bottlenecks":["b-real-world-evidence","b-global-access"],"keyPapers":["paper-gyawali-jama-intern-med"],"journals":[],"dependsOn":[],"notes":[],"hypothesis":"Outcome data from access programmes will show that effectiveness in LMIC settings differs substantially from trial results for at least some drugs, changing which drugs and supportive care are prioritised.","rationale":"Paediatric leukaemia programmes in LMICs showed that outcome tracking identified treatment abandonment and toxic death as the main problems, leading to protocol changes that doubled survival.","test":"Add the outcome record to two large access programmes for two years; report completeness and whether the data changed programme design.","maturity":"speculative","actor":"philanthropy","cost":"small","horizonYears":3},"route":"/ideas/idea-data-access-programme-outcomes/","neighbours":{"idea":[{"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/"}],"section":[{"id":"ai-computation","kind":"section","name":"AI & Computation","route":"/fronts/ai-computation/"}],"term":[{"id":"real-world-evidence","kind":"term","name":"Real-world evidence","route":"/terms/real-world-evidence/"}],"bottleneck":[{"id":"b-global-access","kind":"bottleneck","name":"Most of the world has almost no cancer care","route":"/bottlenecks/b-global-access/"},{"id":"b-real-world-evidence","kind":"bottleneck","name":"Weak real-world evidence and registries","route":"/bottlenecks/b-real-world-evidence/"}],"paper":[{"id":"paper-gyawali-jama-intern-med","kind":"paper","name":"Assessment of the Clinical Benefit of Cancer Drugs Receiving Accelerated Approval","route":"/key-papers/paper-gyawali-jama-intern-med/"}]}}