# One outcome record for every donated or discounted cancer drug pack

Source: https://onco.cc/ideas/idea-data-access-programme-outcomes/  
OnCo record `idea-data-access-programme-outcomes` (Idea). Data CC BY-NC 4.0, attribute "Data from OnCo (onco.cc)"; commercial use needs a licence.

## TL;DR

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.

## Fields

- Kind: Idea
- Last checked: 2026-09-08
- 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.
- Proposed 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

## Sources

- 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): https://doi.org/10.1001/jamainternmed.2019.0462

## Connected records

- ideas: [Open-source cancer registry-in-a-box for low-resource settings](https://onco.cc/ideas/idea-data-registry-in-a-box/)
- fronts: [AI & Computation](https://onco.cc/fronts/ai-computation/)
- terms: [Real-world evidence](https://onco.cc/terms/real-world-evidence/)
- bottlenecks: [Most of the world has almost no cancer care](https://onco.cc/bottlenecks/b-global-access/), [Weak real-world evidence and registries](https://onco.cc/bottlenecks/b-real-world-evidence/)
- key papers: [Assessment of the Clinical Benefit of Cancer Drugs Receiving Accelerated Approval](https://onco.cc/key-papers/paper-gyawali-jama-intern-med/)

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