{"entity":{"id":"idea-data-pro-as-structured-standard","kind":"idea","name":"Patient-reported symptoms captured as standard structured data in every clinic","aka":[],"tldr":"Every cancer clinic would collect patients' own reports of symptoms and quality of life through a standard questionnaire that feeds straight into the record and into research datasets.","summary":"Electronic patient-reported outcomes (ePRO) improved survival in a randomised trial (Basch et al., 2017) yet remain absent from most routine records and from almost all real-world datasets. The proposal standardises a minimal PRO set (PRO-CTCAE core items, EQ-5D-5L) as an mCODE profile, requires it in oncology EHR certification, and funds the clinic workflow. Toxicity and quality of life would then be available as a real-world endpoint at scale.","asOf":"2026-09-08","links":[{"label":"Basch et al., JAMA 2017 (ePRO and survival)","url":"https://jamanetwork.com/journals/jama/fullarticle/2630810"}],"tags":[],"related":[],"cancers":[],"sections":["ai-computation","supportive-care"],"technologies":[],"targets":[],"drugs":[],"companies":[],"institutions":[],"pathways":[],"terms":["real-world-evidence"],"trials":[],"people":[],"bottlenecks":["b-data-silos","b-toxicity-qol"],"keyPapers":[],"journals":[],"dependsOn":[],"notes":[],"hypothesis":"Standardised ePRO capture in more than 50 percent of oncology visits will make real-world toxicity comparisons between drugs possible and reveal quality-of-life differences invisible in registries.","rationale":"Symptom monitoring has trial-proven benefit for patients; the data infrastructure payoff is additional. Standardisation is what makes the data pool.","test":"Implement the standard PRO set at ten centres and compare response rates and data completeness with centres using bespoke tools; produce a first cross-centre real-world toxicity comparison for two competing regimens.","maturity":"being-tested-at-scale","actor":"clinic","cost":"medium","horizonYears":3},"route":"/ideas/idea-data-pro-as-structured-standard/","neighbours":{"section":[{"id":"ai-computation","kind":"section","name":"AI & Computation","route":"/fronts/ai-computation/"},{"id":"supportive-care","kind":"section","name":"Supportive Care & Survivorship","route":"/fronts/supportive-care/"}],"term":[{"id":"real-world-evidence","kind":"term","name":"Real-world evidence","route":"/terms/real-world-evidence/"}],"bottleneck":[{"id":"b-data-silos","kind":"bottleneck","name":"Data silos","route":"/bottlenecks/b-data-silos/"},{"id":"b-toxicity-qol","kind":"bottleneck","name":"Toxicity and quality of life are undervalued","route":"/bottlenecks/b-toxicity-qol/"}],"idea":[{"id":"idea-data-toxicity-cds-for-nurses","kind":"idea","name":"Toxicity-management decision support for nurses and pharmacists","route":"/ideas/idea-data-toxicity-cds-for-nurses/"}],"paper":[{"id":"paper-basch-epro-survival-jama-2017","kind":"paper","name":"Basch: asking patients to report symptoms online during chemotherapy improved survival","route":"/key-papers/paper-basch-epro-survival-jama-2017/"}]}}