Working Groups

Cancer Outcomes Research WG

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Cinzia Brunelli

Outcome research has been defined as the study of the final results of health care interventions, and is aimed at providing all stakeholders the scientific evidence to base their decisions. Clinicians have to select effective and non-harmful treatments for their patients, policy-makers are interested in identifying cost-ineffective interventions/services, while patients need to make informed treatment choices.
Outcome in cancer care has traditionally been appraised in terms clinical indicators such as mortality, survival, recurrence and other specific physiological measures. However, clinical outcomes need to be integrated with measures taking into account patients' experiences, preferences, and values, in order to fully understand the complexity of cancer burden. Indeed, patients have unique perspectives and may consider issues differently than clinicians, scientists, regulators and policy makers.
A large body of evidence now supports the validity, reliability and interpretability of information collected through patients’ self-reported questionnaires, today mostly known as Patient Reported Outcome Measures (PROMs), to indicate aspects related to Health Related Quality of Life dimensions, and Patient Reported Experience Measures (PREMs), to indicate patients’ perceptions of their experience of care.
Real-world evidence is highly relevant in outcome research as it complements the knowledge gained from traditional clinical trials, which often do not reflect everyday clinical practice. Recent development of big-data analytics, combined with the spread of electronic data capture, are promoting the increase in the volume and quality of real world data collection, but while harmonization and sharing of data on traditional clinical cancer outcomes is becoming common practice, the effective integration of PROMs and PREMs data is still far to be reached, mainly due to the current fragmented approach to PROMs/PREMs data collection and use in routine cancer care.
In line with the trend above described, The European Commission Cancer Mission sets the goals to reduce mortality, improve survival and quality of life of patients and citizens, and many of the actions that are expected to be undertaken and implemented in specific calls, involve the active participation of patients and citizens. To respond to these demands, projects applying to future calls will need to adopt tools to assess and collect PROMs and PREMs, to develop expertise in their use in clinical practice and research and methods to integrate them in electronic clinical records.
The main aim of the Cancer Outcome Research working group (COR WG) is to respond to this need and establish and coordinate a network of clinical cancer centers adopting common procedures for the routine collection and sharing of PROMs and PREMs data.
All OECI centers have recently received a questionnaire to explore their experience with the collection of PROMs and PREMs in research and clinical practice and we warmly recommend centers who did not answer the survey to do so.
The COR WG will organize operative meetings addressed to all OECI centers interested in participating in a real world data collection of PROMs and PREMs in their institutions.
The following relevant issues will be addressed during the WG meetings:
  • PROMs and PREMs tools eligible for the OECI data collection
  • qualitative standards for data collection (personnel training, electronic vs paper and pencil assessment, integration with electronic health record)
  • minimum data sets definition (clinical and socio demographic data to be linked to PROMs/PREMs)
  • stakeholders involvement, with a special attention to patients.
  • the role of champions and personnel motivation in PROMs/PREMs implementation
  • governance of routine PROMs data collection in clinical practice
  • GDPR compliance and data sharing agreements
  • technical data sharing procedures
For its aims and content, the COR WG will work in strict connection with the Accreditation and designation Programme as well as with the “Collaboration for good practices with patients WG” and also with the “Cancer economics and Benchmarking WG”.
A standardized adoption of PROMs/PREMs is mostly needed if we aim to promote a patient-centred approach to cancer care. The development of international, coordinated research and implementation actions in this field can be an effective approach to move from local idiosyncratic applications of PROMs and PREMs, to a shared clinical practice based on multidimensional, multiprofessional and multidisciplinary approach.
For further information please contact:

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