Progress in cancer care is about more than survival figures alone. It is also about understanding how people live during and after treatment, including their quality of life, physical functioning, emotional wellbeing, symptoms, treatment burden and the outcomes that matter greatly to patients and their quality of life. In this context, their feedback – expressed through PROMs – is essential.
Yet across Europe, the use of PROMs remains fragmented. Their implementation varies between countries, healthcare systems, research settings and policy processes, with persistent challenges around standardisation, digital infrastructure, clinical workflows, data interpretation and uptake by regulators, payers and decision-makers.
This discussion then focused on three key areas: embedding PROMs in clinical practice, strengthening clinical trials through PROMs, and using them to inform policy and decision-making.
Participants explored the practical barriers that continue to slow adoption, from administrative burden and workflow concerns to inconsistent standards, limited interoperability and uncertainty about how these should guide clinical, regulatory and health technology assessment processes.
The event also considered existing European and international initiatives, examples of good practice, and the strategic choices needed to ensure that patient-reported outcomes become a stronger part of cancer care, research and health policy across Europe.
Speakers
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Nicolò Battisti Board Member & Co-Chair of the Inequalities Network, European Cancer Organisation
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Monica Racovita Access and Policy Manager, Myeloma Patients Europe
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Francesco Pignatti Scientific Adviser for Oncology, European Medicines Agency
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Bernhard Holzner Founder and Leader, Patient-Reported Outcome (PRO) working group, Medical University of Innsbruck
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Lis Puga Research Manager of the EuroACT project
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Matthias Rose Professor and Chair, Department of Psychosomatic Medicine, Charite Centre for PRO Research
Speakers
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Nicolò Battisti Board Member & Co-Chair of the Inequalities Network, European Cancer Organisation
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Monica Racovita Access and Policy Manager, Myeloma Patients Europe
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Francesco Pignatti Scientific Adviser for Oncology, European Medicines Agency
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Bernhard Holzner Founder and Leader, Patient-Reported Outcome (PRO) working group, Medical University of Innsbruck
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Lis Puga Research Manager of the EuroACT project
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Matthias Rose Professor and Chair, Department of Psychosomatic Medicine, Charite Centre for PRO Research
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Nicolò Battisti Board Member & Co-Chair of the Inequalities Network, European Cancer Organisation Read Bio
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Monica Racovita Access and Policy Manager, Myeloma Patients Europe
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Susanne Dieroff Hay President, Swedish Breast Cancer Association & Member of the Executive Board, EuropaDonna
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Bernhard Holzner Founder and Leader, Patient-Reported Outcome (PRO) working group, Medical University of Innsbruck Read Bio
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Matthias Rose Professor and Chair, Department of Psychosomatic Medicine, Charite Centre for PRO Research Read Bio
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Gilliosa Spurrier-Bernard Board Member and Co-Chair of the Patient Advisory Committee, European Cancer Organisation & Vice-President, Melanoma Patients Network Europe Read Bio
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Jose Diaz Lead of Global Health Economics and Outcomes Research - Health Systems Economics & Value of Innovation, Bristol Myers Squibb
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Francesco Fusco Director Health Economics and Outcomes Research (HEOR), Regeneron
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Speakers
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Nicolò Battisti Board Member & Co-Chair of the Inequalities Network, European Cancer Organisation
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Monica Racovita Access and Policy Manager, Myeloma Patients Europe
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Francesco Pignatti Scientific Adviser for Oncology, European Medicines Agency
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Bernhard Holzner Founder and Leader, Patient-Reported Outcome (PRO) working group, Medical University of Innsbruck
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Lis Puga Research Manager of the EuroACT project
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Matthias Rose Professor and Chair, Department of Psychosomatic Medicine, Charite Centre for PRO Research
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15:00 – 15:10 |
Welcome and introductions The roundtable will open with a short welcome and framing of the discussion, setting out why Patient-Reported Outcome Measures (or PROMs) are increasingly important for patient-centred cancer care, research and decision-making in Europe. |
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15:10 – 15:55 |
Embedding PROMs in Clinical Practice This session will explore how PROMs can be easily applied in routine cancer care, supporting clinical decision-making and improving communication between patients and their care teams. The goal is clear: ensure that quality of life and the lived experience are better reflected in care. Presentations will include findings from the Charité Centre for Patient-Centred Outcomes Research, and the patient perspective reflected throughout. Discussions will also draw on lessons from the speakers and their experience implementing PROMs in clinical care. |
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15:55 – 16:40 |
Strengthening Clinical Trials Through PROMs This session will examine how PROMs can strengthen clinical trials by ensuring that patient-reported outcomes are designed, collected and used in a meaningful way. Speakers will consider progress in Europe, the need for more standardised approaches, the role of PROMs in advanced cancer and post-authorisation evidence generation, and the contribution of tools such as the EuroACT dashboard towards (geographically) equitable use of PROMs in clinical trials. Monica Racovita - Access and Policy Manager, Myeloma Patients Europe |
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16:40 – 17:25 |
Using PROMs to Inform Policy and Decision-Making This session will consider how PROMs can better inform regulatory, health technology assessment, reimbursement and wider policy decisions. With the EMA Reflection Paper on Patient Experience Data as a starting point, the discussions will focus on how policies can be shaped to ensure not only that patient-centred evidence can be made more robust, comparable, and trusted, but also that the inclusion of these endpoints in decision-making is meaningful and fit-for-purpose. Francesco Pignatti - Scientific Adviser for Oncology, European Medicines Agency |
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17:25 – 17:30 |
Event conclusions The event will close with a short summary of the main messages emerging from the discussion, including practical considerations and policy-relevant recommendations for strengthening the use of PROMs across cancer care, research and decision-making in Europe. |
Speakers
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Nicolò Battisti Board Member & Co-Chair of the Inequalities Network, European Cancer Organisation
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Monica Racovita Access and Policy Manager, Myeloma Patients Europe
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Francesco Pignatti Scientific Adviser for Oncology, European Medicines Agency
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Bernhard Holzner Founder and Leader, Patient-Reported Outcome (PRO) working group, Medical University of Innsbruck
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Lis Puga Research Manager of the EuroACT project
-
Matthias Rose Professor and Chair, Department of Psychosomatic Medicine, Charite Centre for PRO Research
Speakers
-
Nicolò Battisti Board Member & Co-Chair of the Inequalities Network, European Cancer Organisation
-
Monica Racovita Access and Policy Manager, Myeloma Patients Europe
-
Francesco Pignatti Scientific Adviser for Oncology, European Medicines Agency
-
Bernhard Holzner Founder and Leader, Patient-Reported Outcome (PRO) working group, Medical University of Innsbruck
-
Lis Puga Research Manager of the EuroACT project
-
Matthias Rose Professor and Chair, Department of Psychosomatic Medicine, Charite Centre for PRO Research
