New Open-Access Article: Patient-Reported Outcomes as a Compass for Oncology Care

How can Patient-Reported Outcomes (PROs) be integrated into oncology care in a way that ensures they are not only collected, but meaningfully used?
A new open-access article published in Die Onkologie addresses this question by presenting a pragmatic, cross-sector concept for integrating PROs from primary care to the Molecular Tumor Board (MTB).

PROs: More Than Questionnaires

PROs capture how patients experience symptoms, side effects, functional limitations, and quality of life from their own perspective. In precision oncology, they provide a critical complement to molecular and clinical data. However, in routine care, PROs often remain underutilized, frequently collected in isolation, insufficiently contextualized, or not systematically linked to clinical decisions.

The newly published article directly tackles these challenges.

A Minimal “Action Loop” for Clinical Practice

At the core of the article is a minimal Action Loop that illustrates how PROs can be embedded into clinical workflows in a structured and practical manner:

• Capture of short, validated PRO measures
• Contextualization over time and alongside clinical events
• Decision-making, where PRO signals are explicitly considered
• Feedback, allowing the impact of actions to be assessed

This loop highlights a central message: PROs create value not through data collection alone, but only when they become visible, actionable, and relevant to clinical decisions.

Designed for Cross-Sector Care – Grounded in Reality

The article positions PROs along the entire patient journey, from the first contact in primary care, through specialist oncology treatment, to the Molecular Tumor Board and back into follow-up care. A particular focus is placed on the German electronic patient record (ePA) as a potential cross-sector backbone.

Importantly, the current maturity level is addressed realistically: the ePA is not yet a nationwide PRO workstation. The article therefore outlines pragmatic transitional pathways, including the use of ePRO tools, structured summaries, and leading visualizations within tumor center systems such as MTB-cBioPortal.

Why This Matters for Patients?

For patients, the proposed approach means one thing above all:
their input does not disappear into a system without consequences.

👉 PROs matter when patient input leads to responses: for example, therapy adjustments, supportive care offers, or timely clinical feedback. In this way, patients become active partners in their care.

Developed Within Strong Project Contexts

The article was developed within several national research and infrastructure initiatives, including PM4Onco, MiHUBx / MiHUB, and PCOR-MII as part of the German Medical Informatics Initiative (MII). The work is funded by the German Federal Ministry of Research, Technology and Space (BMFTR) and embedded in the National Decade Against Cancer.

Read the Full Article

The full article is available open access and addresses clinicians, researchers, and health IT stakeholders interested in advancing patient-centered oncology care.

👉 Read the article:
https://doi.org/10.1007/s00761-025-01899-7