gms | German Medical Science

Background/research question: Involving patients as partners in the planning, conduction and evaluation of biomedical research projects has been recognized as issue of high importance internationally. Many countries have founded institutions (like INVOLVE in the UK or PCORI in the US) that explicitly fund and promote patient and public involvement (PPI). However, conceptual work in the field of PPI is weak and no comprehensive framework has been developed helping researchers think through their planned engagement activities. Accordingly, this project aims to develop a practice-oriented framework that outlines the core dimensions of PPI and how these interlink.

Methods: To develop such a framework, we will combine a purposive literature search (as is typically employed by realist reviews) with conceptual framework analysis as outlined by Jabareen [1]. We will start with a purposively selected sample of published literature including systematic reviews, theoretical models, methodological guidance and textbook introductions in/to PPI. We will analyse this sample as outlined by Jabareen [1] using qualitative coding as envisioned by Grounded Theory methodology resulting in a preliminary framework. Based on this framework, we will go back to the literature and purposively select the next sample of literature for analysis to refine the framework. This iterative process of document selection and analysis will be repeated until further literature does not lead to relevant adaptions of the framework suggesting conceptual saturation.

Preliminary or expected results, outlook: We expect to provide a framework that not only outlines the core dimensions for successful PPI, but also helps to understand how decisions on one dimension forestall decisions on other dimensions. From our previous engagement with the literature, we are already aware of the importance of certain dimensions, for example “objectives of PPI” or “necessary competences of researchers and participating patients”. PPI can have different ojectives like “increasing relevance of research”, “increasing accountability” or “inducing change” [2] which can also be combined. The focus on either one of these aims will clearly impact on methodological, procedural and further decisions to be taken.

This analysis can only be the first step in developing such a framework. Further feedback will be sought from PPI researchers. It should also be tested in practice.