JMIR Publications

ABSTRACT

Background:

Patient-facing cancer portals are increasingly used to provide education, support interpretation of results, navigate services, and guide self-management across the cancer journey. However, variation in content quality, transparency, readability, accessibility, and governance can undermine equity, safety, and trust.

Objective:

To develop and present EU-CiP20 as a first-phase, evidence-informed, operational, and auditable framework of quality criteria for cancer patient portal content.

Methods:

We synthesised established instruments and authoritative guidance on online health information quality, health literacy and plain-language communication, transparency and conflicts of interest, patient engagement, privacy and data protection, digital governance, accessibility, and AI-related safety. Candidate criteria were harmonised from a broader evidence-mapped set (EU-CiP30) into a streamlined taxonomy (EU-CiP20) using explicit consolidation rules and an auditable mapping trail. Each category was operationalised into four observable sub-criteria and scored using a pragmatic 0-2 scale. EU-CiP20 is presented as an initial comprehensive framework to be refined in the next phase through stakeholder focus groups, an online survey with affected cancer patients, expert inquiry, and a Delphi expert panel, with the aim of reducing the 20 criteria to a final operational core of approximately 10 criteria.

Results:

EU-CiP20 comprises five domains and 20 categories spanning accessibility and comprehensibility; evidence and content governance; relevance and personalisation; human-centred design and empowerment; and ethics, safety, and trust. In the pilot, adjusted EU-CiP20 totals ranged from 19.5% to 40.6%. The most consistent gaps were governance signals required for portal readiness, including named clinical ownership, explicit review cycles, evidence traceability, and accessibility auditability. Comparator tools characterised content-level strengths but did not fully capture these governance risks.

Conclusions:

EU-CiP20 offers a practical and auditable first-phase approach to strengthen governance of patient-facing cancer portal content. It complements existing information-quality instruments by linking readability, evidence governance, relevance, empowerment, transparency, safety, and digital trust within a single operational taxonomy. The work is not yet complete: the current 20-criteria framework will be refined through stakeholder focus groups, an online survey with affected cancer patients, expert inquiry, and Delphi expert panel consensus to produce a shorter final set of approximately 10 criteria, followed by assessment of inter-rater reliability, feasibility, sensitivity to change, and real-world implementation impact.