Research priorities of patients with neuromuscular disease.

PURPOSE: This paper describes a study in which patients with neuromuscular disease (NMD) were engaged to list top-priorities for scientific research in order to complement the researchers' agenda. METHOD: A dialogic model for research agenda setting was used. Interviews, focus groups and expert meetings with patients were held to identify research topics. Research topics were prioritized via a questionnaire. Agendas were integrated in a dialogue meeting with professionals and patients. RESULTS: The research agenda of NMD patients is divided in four research domains, with a total of 24 research topics. These domains include (1) health; (2) quality of life; (3)quality of care and support, and (4) basic issues. Among the research domains highest priority was given to research on health, followed by research on quality of life. CONCLUSIONS: Both patients and professionals agreed a proper balance needs to be found between fundamental research and research on symptomatic treatment and quality of life. They concluded that more attention is required for research on the effective treatment of symptoms, quality of life and implementation of knowledge about NMD in regular care.

Collaboration and co-ownership in research: dynamics and dialogues between patient research partners and professional researchers in a research team.

BACKGROUND: Different strategies by which patients can be involved in research include consultation, control and collaboration. This article focuses on collaboration within research teams and considers this with reference to a research project about setting a social-scientific agenda for health research from the perspectives of patients with a chronic kidney disease (CKD). OBJECTIVE: To examine the dynamics and dialogues in a collaboration between patient research partners and professional researchers. DESIGN: A responsive methodology was used in the research project. Two patient research partners participated in the research team. Twenty-seven patients with CKD and parents of young children with CKD were interviewed, seven focus groups were organized and observations were held at a dialysis centre. RESULTS: During the collaboration, the research partners and professional researchers engaged in a mutual learning process in all stages of the project. The professional researchers gave the research partners a sense of ownership in the research process. The research partners could relate to the lives of patients by using their experiential knowledge. In the context of collaborative working, this helped shape an agenda for research. CONCLUSION AND DISCUSSION: The active involvement of patients as research partners can add value to a research strategy, especially when research partners and professional researchers engage in a dialogue that is open, inclusive and deliberative. Issues for discussion include the possibility of 'over-involvement', the research profile and training of research partners and whether participation of patients is restricted to certain types of research.

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

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.