ideasIdea
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.
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.
What would test it
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
Who has to act
clinic
Cost to try
Medium ($1M to $50M)
Years to first evidence
3
Bottlenecks it attacks
- 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.