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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.
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.
Shares Basch: asking patients to report symptoms online during chemotherapy improved survival, Toxicity and quality of life are undervalued.
Shares Basch: asking patients to report symptoms online during chemotherapy improved survival, Toxicity and quality of life are undervalued.
Shares Real-world evidence, Data silos.
Shares Real-world evidence, Data silos.
Shares Real-world evidence, Data silos.
Shares Real-world evidence, Data silos.
Shares Data silos, Toxicity and quality of life are undervalued.
Shares Real-world evidence, Data silos.