Work package 2

Theoretical framework and data collection preparation

Main objectives:

  • To validate and refine a taxonomy for self-management interventions (SMIs) to inform the research steps that follow, ensuring both homogeneity and comparability
  • To identify Core Outcome Sets (COS) and/or key outcomes for SMIs
  • To achieve consensus on variables that characterise SMIs and prepare related materials for data collection

Approach:

The theoretical framework is developed through the identification and selection of existing self-management taxonomies, which increase clarity in defining and comparing complex phenomena. We define and conceptualise the critical attributes of SMIs by using conceptual mapping. To test the classification proposed, we identify and consult stakeholders (including patients) by online survey and refine the classification by integrating the consultation results. A list of outcomes for each condition is developed using data from previous literature reviews within EU projects (Pro-STEP and EMPATHiE), existing COS databases (e.g. COMET), and websites of relevant organisations. Outcomes will be classified to measure the impact of SMIs and comprise clinical and patient reported measures as well as use of services, etc. We develop a data extraction protocol, guidelines and a data extraction form for reviewers. To ensure quality of the data collection process and to increase agreement between evaluators, training sessions, combining written material and a face-to-face session, are held.

Leading partner: Fundación Avedis Donabedian (FAD), Spain

Other partners involved:

  • European Patients’ Forum (EPF), Belgium
  • 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

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