Outcomes research

This area of research aims to optimise patient outcomes by generating knowledge to improve clinical decision-making and sustainable health care delivery. 

Outcomes research studies the performance of health care systems in terms of patient and population the health and well-being.

The factors it takes into account include mortality, morbidity, quality of life, symptoms, quality of care, risk factors, health economic measures and patients’ experiences, preferences, and values.

Criteria and targets

Stakeholder engagement

  • High awareness among professionals and patients to enable discussions with patients about outcomes and outcome research
  • Involvement of patients/patient organisations as co-researchers
  • Patients and public representatives are part of ethical committees in the institutions

Standardised data collection

  • Outcome data is used to improve access to cancer care, research, and education
  • Standardized collection of return to work, sick-leave and social participation
  • Standardized collection of geriatric assessment data

National cancer registry

  • Outcome research data is integrated into the national or regional cancer registry
  • Legal framework and data sharing agreements are in place
  • Automated and regular merging of outcome data sources

ICT

  • Accessible, standardized and interoperable data and databases for internal and external partners
  • Scope includes administrative, clinical databases, disease registers, clinical trial databases, datasets and biobanks

Resources