Identification, monitoring, assessment system

Lead: Utrecht University December 2024

D2.1 Systematic review report and updates V1

D2.1 lays the first stone of the Knowledge Warehouse. Led by Utrecht University, it reports an umbrella review of the scientific evidence on patient-generated health data (PGHD) across disease areas, searching four databases and screening more than 12,000 records through the project’s crowdsourced Screenathon method to arrive at 283 papers within scope. The review also names what is missing: patient-reported experience measures, patient preference information and evidence on how PGHD improves medical device design remain thinly covered, and those gaps set the agenda for the work that follows.

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Lead: PredictBy December 2024

D2.2 Practices report and updates V1

Where D2.1 looks at published evidence, D2.2 looks at what other projects are already doing. PredictBy developed an Analysis of Practice template — project overview, methodology, results, implications — and applied it to five IMI initiatives: PREFER, BEAMER, Gravitate-Health, SISAQOL and PARADIGM. The result is a first map of complementary approaches and of the places where IMPROVE can build on work already done rather than repeat it.

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Lead: Utrecht University December 2025

D2.3 Systematic review report and updates V2

The second iteration completes and updates the Knowledge Warehouse. A second Screenathon screened a further 5,842 records and added 221 publications to the 266 already included, covering roughly 4,668 individual studies across 11 disease areas including oncology, cardiovascular disease, neurology and ophthalmology. The analysis is candid about what the evidence base looks like: a geographical bias towards Western countries, uneven coverage between conditions — breast cancer well documented, atrial fibrillation barely — and PROMs far better represented than PREMs or patient preference information.

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Lead: PredictBy January 2026

D2.7 Practices report and updates V2

The second practices report maps five major European initiatives generating real-world evidence and PGHD — EHDEN, PaLaDIn, IDEA-FAST, ConcePTION and GREG — using the same standardised template, so that findings can be compared rather than merely collected. It draws out the transferable lessons for bringing patient-reported outcomes into value-based decision-making, and concludes that a working PGHD ecosystem needs harmonised data models, federated analytics, patient-centred design and sustained stakeholder engagement to stay credible with regulators over the long term.

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