Patients as partners in responsive research: methodological notions for collaborations in mixed research teams

Abstract

Patients are increasingly actively involved in research. We depart from an approach that understands patient participation as dialogue. This idea is grounded in hermeneutic philosophy and responsive research. Patients are engaged in research via dialogues with other stakeholders. New is the inclusion of patients as research partners. Several methodological notions underpin responsive research. In two health research agenda-setting processes (intellectual disability and kidney disease), these notions have been applied and refined for collaboration with research partners in mixed research teams. The findings demonstrate that equal partnerships include involvement in all research activities from beginning to end, a focus on experiential knowledge, mutual learning, openness, and respect. Mutual learning processes help to overcome stereotypes and handle tensions. Other experiences include the financial reimbursement of research partners, and the necessity of an acceptable workload and scheme. The collaboration might then have a surplus value for the research process and for those involved.