European Cancer Organisation

NEWS: Building the roadmap to outcomes-based cancer care

The European CanCer Organisation and the Collaboration for Oncology Data in Europe announce a pragmatic approach to understand, evaluate, and improve clinical care in Oncology


LOCATION Vienna, Austria, DATE 7 September 2018 – Today the European CanCer Organisation (ECCO) and the Collaboration for Oncology Data in Europe (CODE) announced the results of a research project which identifies a standard set of eight “pragmatic outcome measures” in cancer care that have value to both clinical teams and patients. These outcomes measures were derived from real-world data collected as part of routine care, and validated by leading clinicians and patient advocates. Their findings represent a valuable step in Europe’s move toward outcomes-based care in cancer.

The jointly published report, Understanding Pragmatic Outcome Measures in Oncology, reflects 25 interviews with stakeholders from the European oncology community including: patient representatives, clinicians and individuals from various oncologic professional bodies. The results of this project will be discussed at the ECCO 2018 Summit, the 7 to 9 September 2018, and at a roundtable in Brussels on 6 November 2018. 

A key driver of the research was to build a better understanding of how health systems can move towards more outcome-based cancer care. With a focus on “pragmatic outcome measures,” the research evaluated opinions from healthcare professionals and patients regarding the value of widely available outcome measures, as well as measures which are more complex to assess. The ultimate objective of the report was to chart a path toward comprehensive outcome measurement through achievable stages.


Key findings from the research include:

  • Consensus exists on the value that widely available, systematic outcomes measurement can provide to all involved in cancer care 
  • Alignment on the value to patients and clinicians of an initial set of “pragmatic outcomes measures” which can be collected relatively easily and at scale in near real time as a first step towards a part of a broader programme toward comprehensive outcome management for cancer care
  • Exploring and reconciling metrics that are currently perceived as having different value to patients and clinicians, respectively 
  • The need to address practical hurdles, including capturing data in a structured and standardized manner given technology and resource limitations, and a lack of guidelines. Removing such obstacles are necessary steps toward developing an integrated approach that incorporates patient reported data into routine clinical practice 
  • A call to come together at the European level to ensure that efforts to capture outcomes measures are properly resourced and prioritised
  • A call to develop and embed outcomes measurement into European-level ”essential requirements” 


Commenting on the findings, 

ECCO President Professor Philip Poortmans said: “Outcome measurement is seen by many within the oncology community as an exciting opportunity to have a more patient-centric approach to care, and to allow healthcare providers to make informed decisions based on patient current needs and historical research. However, we need to now move the discussion beyond simple expression of aspiration and into the practicalities of execution. The results of this research provide excellent insights for decision makers about the next steps in the journey towards comprehensive outcome measurement.”  

Professor David Kerr, Head of Oncology at the University of Oxford and Chair of CODE’s Clinical and Analytical Steering Committee added: “This research provides clarity about immediate opportunities to enable the European cancer community to improve understanding of the value of treatment interventions. Harnessing the insights that are available to us today, will enable us to better inform decisions and contribute to the advancement of cancer care. Pragmatic outcomes measures are an actionable immediate first step towards widespread collection and use of comprehensive outcomes measurement in the European oncology community. The recommendations in this report also set out a clear roadmap where increased focus and investment in the near term will allow us to gain further insight and work together towards a comprehensive, longer-term approach. ” 



1. The European CanCer Organisation (ECCO) is a not-for-profit federation that exists to uphold the right of all European cancer patients to the best possible treatment and care, promoting interaction between all organisations involved in cancer at European level. Through its 24 Member Societies - representing over 150 000 professionals - ECCO is the only multidisciplinary organisation that connects and responds to all stakeholders in oncology Europe-wide. It does this by creating awareness of patients’ needs and wishes, encouraging progressive thinking in cancer policy, training and education and promoting European cancer research, prevention, diagnosis, treatment and quality care through the organisation of international multidisciplinary meetings. Further information here.

2. The ECCO 2018 European Cancer Summit, will be held on 7-9 September 2018 in Vienna, Austria bringing worldwide leaders from the cancer healthcare, patient advocacy and stakeholder communities together in a unique multidisciplinary forum. Outcomes Research is one of the three topic pillars of the event. Further information here.

3. The ECCO-CODE research project was jointly developed through open conversations and dialogue with oversight by both parties’ advisory boards: the ECCO OncoPolicy Committee Executive and the CODE Clinical and Analytical Steering Committee (CASC), whereby areas of mutual research interest were identified, and was supported via grant funding from IQVIA World Publications Limited to ECCO. Further information here.

4. The Collaboration for Oncology Data in Europe (CODE) is an initiative supporting the creation of the Oncology Data Network (ODN) that will provide reliable, up-to-date information on how anti-cancer medicines are actually itself used in clinical practice and enable flexible payment models. The ODN is a collaborative data sharing network open to any cancer treatment centres across Europe that wishes to join, to share non-identified information on how treatment centre-administered anti-cancer medicines are used in clinical practice. 

5. CODE is led by IQVIA and has been established with support from leading biopharmaceutical companies as the Biopharmaceutical Members, who joined CODE as part of their commitment to providing patients with access to innovative medicines, in a way that is financially sustainable for the payers, biopharmaceutical research and development and oncology community. The Biopharmaceutical Members are Bristol-Myers Squibb, Eli Lilly and Company, Merck, Pfizer, AstraZeneca and Amgen. To learn more, visit:

6. ECCO essential requirements for quality cancer care (ERQCC) are checklists and explanations of organisation and actions that are necessary to give high-quality care to patients who have a specific tumour type. They are written by European experts representing all disciplines involved in cancer care. More information here.
7. For more information on this research project, or on the upcoming policy roundtable in November, please contact Richard Price, EU Policy Affairs Manager, ECCO, at or Julia Levy, External Engagement Lead, CODE, at

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