Evaluation of patient involvement activities during multiple stages of health research projects in German primary care: concept development for a meta-level study

Susanne Kersten, Christine Kersting, Judith Tillmann, Alexandra Schmidt, Achim Mortsiefer

Keywords: patient involvement, patient engagement, action reseach, meta-study

Background:

Patient involvement in research projects is an overarching goal that has only been achieved to a limited extent in Germany and some other European countries. Numerous frameworks exist for patient engagement, but there is a lack of empirically collected findings on which involvement activities succeed in which project phase under which framework conditions and have a positive impact.

Research questions:

This paper reports on the development of a concept for a meta-level study on patient engagement to be piloted in approximately 4-6 different research projects across all project stages. The aim of this meta-level study is to gain more profound evidence, which involvement activities and strategies might be conducive at which stage of a research project and under what circumstances.

Method:

Qualitative accompanying study and action research on patient engagement in 4-6 research projects:
Phase 1: literature reviews and interviews with experts on patient involvement as well as workshops with different stakeholders in general medical research projects.
Phase 2: effect, intensity, benefits and acceptance of patient involvement will be assessed and evaluated by means of interviews and focus groups. The different stakeholders will be recorded on a project-specific and cross-project basis.
Phase 3: Recommendations will be formulated as a synthesis, followed by an evaluation in a Delphi process.

Results:

The literature research is currently being carried out. In a first workshop on a new research project, a strong interest of all stakeholders for patient involvement in all project phases emerged, with the exception of the scientific evaluation, for which the scientists were considered mainly responsible. More results from project phase 1 will be available until the congress.

Conclusions:

A systematic, cross-project exchange of experiences is necessary to capture impact, barriers and facilitating factors for patient engagement in research and to establish a sustainable involvement culture.

Points for discussion:

What is your experience of patient participation in research from the different European countries?

What do you think needs to be considered methodologically in our concept of a cross-project meta-study?

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