Defining an international set of health outcomes

The Decision Group and a leading academic hospital in The Netherlands defined an international set of health outcomes to create one language for all people involved in improving hemophilia-care.

  • Based on Porter’s Outcomes Measures Hierarchy.
  • ICHOM compliant outcome set.
  • Representing true care ‘results’ over a full cycle of care.
  • Includes patients’ view and involvement.
  • Enables medical teams and patients to act upon.
  • Allows for international universal use and comparing between health care facilities.

About this project

PWH representatives, medical and acdemic experts in hemophilia collectively developed an consensus-based outcomes set for PWH following a structured and robust iterative process in which PWH (representatives) played a pivotal role.

Ten health outcomes, subdivided in Porter’s Outcomes Measures Hierarchy, were selected and thoroughly defined to standardize measurement and allow for continuous improvement of hemophilia.


Project Teams


PWH representatives


Health outcomes

Our role

Using the methodology from The Decision Group and Institute, our role was to set-up and manage the project with a focus on content, methodology, organization and communication. This containt creating preparatory documents, moderating the steering group and panel meetings, practical and technical organisation of web-based meetings, securing VBHC methodology, quality checks and VBHC reviews, execution of the international academic council and project management. Project was based upon our experience with building VBHC and ICHOM compliant outcome sets in e.g. (lung, prostate, breast) cancer, internal medicine, orthopedics/spine and palliative care.