Europe’s cancer battle needs more data from patient experiences

Cancer care in Europe is grappling with critical challenges, including inefficiencies, disparities in access, and insufficient focus on patient-centred approaches that prioritise the patient’s experiences and perspectives.

New strategies are needed to integrate patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) in healthcare systems.

“Several indicators show major disparities in cancer prevention and care between and within EU Member States – in access to prevention programmes, rates of early cancer detection, treatment and survival. Better understanding what lies behind and how to tackle such disparities is imperative to improve the health of Europeans,” Caroline Berchet, PhD health economist at the OECD Health Division told Euractiv.

The All.Can Action Guide for Efficient Cancer Care, emphasises the use of Patient-Reported Outcome Measures (PROMs) and Patient-Reported Experience Measures (PREMs) as an effective way to tackle these challenges.

These tools hold the potential to improve cancer care through a better alignment with people’s needs and preferences, fostering collaboration between patients and healthcare providers.

The All.Can Action Guide

The All.Can Action Guide for Efficient Cancer Care, developed in collaboration with the University of Amsterdam, provides a comprehensive roadmap to enhance cancer care efficiency across health systems. It emphasises delivering faster, more coordinated, equitable and patient-centred cancer care throughout Europe.

“The aim is simple, yet deeply impactful: put the patient at the centre of care,” remarked Ana Sofia Carvalho, MD MScPH, PhD Candidate at Amsterdam UMC and lead researcher of the All.Can Action Guide, reflecting on the transformative impact of PROMs and PREMs.

“These measures ensure that the care we deliver aligns with what matters most to the people receiving it.”

The role of PROMs and PREMs in efficiency

PROMs assess health outcomes from the patient’s perspective, capturing their physical and emotional well-being. In contrast, PREMs evaluate patients’ experiences, focusing on dimensions like communication, coordination, and access to care.

“It’s not about expecting the doctor to say, ‘Your exam is fine.’ It’s about the patient being able to say, ‘I feel better now, and the care provided met my needs,’” explained Carvalho. “This shift in focus is pivotal for building a health system that truly serves its people.”

Systematic collection and analysis of these metrics can identify inefficiencies, improve care delivery, and enhance patient safety. They also pave the way for shared decision-making, which not only empowers patients but also reduces treatment-related anxiety.

Success stories: England and Switzerland

The integration of PROMs and PREMs is already yielding results in England and Switzerland. England’s National Cancer Patient Experience Survey (NCPES) has been a cornerstone of patient-centred cancer care since 2010. It provides comprehensive data on care experiences, guiding improvements across the National Health Service (NHS).

In Switzerland, the SCAPE (Swiss Cancer Patient Experiences) surveys offer a compelling example of innovation in a decentralised healthcare system. The initiative began in four hospitals in 2018 and has since expanded to 21 oncology centres across the country, encompassing French-, German-, and Italian-speaking regions.

“SCAPE is a success story,” shared Carvalho. “It’s a testament to the power of a small, focused team with clear objectives. They adapted the tools developed in England, ensuring cultural and linguistic relevance for Swiss patients, involving the public and patients throughout the whole process.”

However, challenges remain. “The biggest hurdle is sustainability,” the researcher noted. “Consistent funding is needed to continue and expand these efforts.”

Overcoming barriers to implementation

Despite the promise of PROMs and PREMs, implementation is not without obstacles.

Standardisation is a critical hurdle, as healthcare systems vary widely across Europe. Political will and funding are equally crucial, as highlighted by the SCAPE project.

“In Switzerland, we learned that one of the biggest challenges was adapting tools to the multilingual and culturally diverse population,” explained Carvalho “But involving patients and providers from the outset ensured that the surveys were both meaningful and actionable.”

Legal frameworks, interoperability of health data systems, and collaboration among stakeholders are essential for scaling these initiatives.

Countries must also address disparities in access to care, ensuring that vulnerable populations are not left behind.

The path forward: recommendations for Europe

The All.Can Action Guide outlines a clear path forward for Europe to fully harness the potential of patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs).

First, the guide recommends adopting standardised instruments to collect patient-reported data consistently across regions and institutions. This unified approach ensures that the data is comparable and actionable across different healthcare systems.

Secondly, it emphasises the importance of integrating patient-reported data into cancer registries. By embedding PROMs and PREMs within these registries, healthcare professionals and policymakers can enhance the utility of the data for informed decision-making.

The guide also calls for the active involvement of patients in the design and evaluation of care systems. Engaging patients and their communities in this process ensures that healthcare systems address their needs and reflect accurately their experiences.

Lastly, the guide stresses the necessity of securing sustained funding. Long-term financial support is critical to ensure the continuity and scalability of these initiatives, allowing them to achieve meaningful impact over time.

“The ultimate goal,” concluded Carvalho, “is not just to treat cancer, but to ensure that the care provided effectively addresses the needs of people affected by it. That’s the promise of a patient-centred health system.”

From metrics to meaningful change

At its core, the push for PROMs and PREMs is about transforming data into actionable insights. These tools are not ends in themselves but means to achieve better outcomes, greater equity, and a more humane healthcare system.

“Regularly collecting and analysing patient-reported data isn’t just a technical exercise” emphasised Carvalho, “it’s about building a healthcare system that listens to and learns from its patients”.

As Europe navigates the complexities of cancer care, embracing patient-centric metrics offers a roadmap for progress. By aligning care with patients’ experiences and outcomes, healthcare providers can ensure that no patient is left behind in the fight against cancer.

[Edited By Brian Maguire | Euractiv’s Advocacy Lab ]