Patient-reported symptoms captured as standard structured data in every clinic
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.
- Data silos · Records, scans, genomes and outcomes sit in separate systems that cannot talk. Every patient's experience is lost to the next.
- Toxicity and quality of life are undervalued · Trials measure how long people live, not how they live. Side-effects are under-reported and under-treated.
Pages like this
not linked directly; found by shared links- IdeaPatient-reported side-effects (PRO-CTCAE) collected and published in every registrational trial
Shares Basch: asking patients to report symptoms online during chemotherapy improved survival, Toxicity and quality of life are undervalued.
- IdeaWeekly electronic symptom reporting as a standard of care during systemic therapy
Shares Basch: asking patients to report symptoms online during chemotherapy improved survival, Toxicity and quality of life are undervalued.
- IdeaWeekly symptom check-ins with automatic alerts as standard of care on treatment
Shares Basch: asking patients to report symptoms online during chemotherapy improved survival, Toxicity and quality of life are undervalued.
- IdeaAn open commons of patient-reported outcome data from cancer trials
Shares Data silos, Toxicity and quality of life are undervalued.
- IdeaNo mCODE, no payment: tie oncology reimbursement to a minimal structured record
Shares Real-world evidence, Data silos.
- IdeaAccredited trusted research environments with curated cancer tables
Shares Real-world evidence, Data silos.
- IdeaLinked prescribing and outcome data to find drug interactions with cancer therapy
Shares Real-world evidence, Toxicity and quality of life are undervalued.
- IdeaWearable activity data as a validated real-world endpoint
Shares Real-world evidence, Toxicity and quality of life are undervalued.