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ECCO-CODE Project

Understanding Pragmatic Outcome Measures in Oncology

The goal of the European CanCer Organisation (ECCO) and the Collaboration for Oncology Data in Europe (CODE) joint initiative is to further explore the topic of outcomes measurement to identify metrics of high clinical value, meaningful for both patients and clinicians, but which can be measured efficiently and be put “at the right scale”. This work is part of the longer journey towards comprehensive outcomes measurement.

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 identify 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.

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” 

 

Download the Report here.

View the Press Release here.

The Collaboration for Oncology Data in Europe: the role of data in realising a New Era in Quality Cancer Care


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