WORK PACKAGE 3

Eliciting patients´ priorities and preferences

Main objectives:

  • To identify key patient-prioritised outcomes as reported in the literature for each of the four chronic conditions
  • To prioritise the Core Outcome Set (COS) identified in WP2 to ensure the inclusion of patient-important outcomes for the evaluation of effectiveness of self-management interventions (SMIs)
  • To ensure that patients’ views and gender and socioeconomic dimensions that could potentially affect equity are taken into account throughout the project

Approach:

This phase of the project aims to ensure that outcomes truly reflect patients´ priorities and preferences. A review of published and grey literature is used to identify how patients value self-management outcomes in the relevant condition. A modified Delphi survey with four panels of patient and carer representatives (one for each condition, each including 8-15 members) ensures the reflection of patient preferences in further comparative analysis. Patients are asked to prioritise relevant outcomes using explicit criteria and a Likert scale. In a final stage, patients are brought together with other stakeholders in a one-day face-to-face workshop to achieve consensus on the final COS to be included in the project. We create mechanisms to ensure that patients´ views, gender issues and socio-economic dimensions are taken into account throughout the different phases of the project.

Leading partner: European Patients’ Forum (EPF), Belgium

Other partners involved:

  • Fundación Avedis Donabedian (FAD), Spain
  • Institute for Medical Technology Assessment (iMTA), The Netherlands
  • Netherlands Institute for Health Services Research (Nivel), The Netherlands
  • Fundació Privada Institut de Recerca de l’Hospital de la Santa Creu i Sant Pau (IR-HSCSP), Spain
  • OptiMedis AG, Germany
  • University of Ioannina (UOI), Greece