Sammanfattning
Background: There is a political focus on patient involvement in research as patient involvement
is assumed to promote better quality in healthcare practices. Aim: To explore potentials in patient
involvement in rheumatologic research in Denmark and highlight possible areas of tension between
researchers’ and patients’ experiences with and attitudes toward patient involvement. Method: Four
semi-structured focus group interviews with researchers and patients were conducted and analysed
by qualitative thematic content analysis. Results: Patient involvement gives researchers multiple
perspectives on their research. Patients may advantageously be involved early in the project phase
and patient involvement is primarily considered relevant in clinical projects, cohort studies and
intervention studies. Due to the asymmetry of power between researchers and patients, it is
important to clarify expectations and agree on roles before and during the involvement. There is
disagreement about whether the patients' intellectual capabilities or their illness experience should
determine which patients are to be involved and what kind of education and guidance is needed.
Furthermore, it is a challenge to document the added value of patient involvement. Conclusion: There
is a need to gain further experiences with patient involvement and systematically to evaluate the
structure of cooperation, the process and outcomes.