Sep 23, 2026
Patient perspectives at the center: PROs at the National Conference “Patients as Partners in Cancer Research"
Exchange and discussion were at the heart of the three-day patient expert conference
At the National Conference “Patients as Partners in Cancer Research”, Dr. Markus Wolfien presented current work on Patient-Reported Outcomes (PROs) from the PM4Onco and MiHUB projects.
“We had already participated in the conference last year, where we received valuable feedback and perspectives from patients and patient representatives. These insights have since been incorporated into our ongoing work and, among other aspects, informed the further development and testing of additional questionnaires.” - Dr. Markus Wolfien
This year’s participation therefore provided an opportunity to build on these previous discussions and gather new feedback on the approaches that have since been further developed.
The focus was not only on technical solutions for the digital collection and visualization of PROs, but above all on the question of how patients can contribute their own perspectives to research and care and how this information can create meaningful value for both patients and clinical teams.
Alongside the many talks and workshops, the direct conversations with patients, patient representatives and other participants were particularly valuable.
They highlighted very clearly which questions are essential when developing digital solutions:
- Is the information understandable?
- Are we addressing needs that are genuinely relevant?
- And are patients involved early enough in shaping new approaches?
This direct exchange adds an essential perspective to scientific and technical development. At the same time, it allows us to incorporate feedback not only at individual points in time, but across several stages of development within PM4Onco and MiHUB.
For those who were unable to attend the conference in person, we are making both the patient questionnaire used in our work and the presented ePoster available:
1. Patient questionnaire:
2. ePoster on Figshare: https://doi.org/10.6084/m9.figshare.32649057
We would like to thank the organizing team and all participants for the open discussions, new perspectives and many valuable suggestions. We are already looking forward to the 6th Patient Expert Conference in Ulm next year, where we hope to build on this year’s discussions and continue developing our work based on further feedback.
Patient-Reported Outcomes in personalized oncology: insights into current work from PM4Onco
Materials and posters presenting current work from MiHUB and PM4Onco at the National Conference “Patients as Partners in Cancer Research”