Mechanisms can help to use patients' experiences of chronic disease in research and practice: an interpretive synthesis

Abstract

Objective: To identify and examine mechanisms through which patients' experiences of chronic disease can be accessed, understood, and used to improve outcomes, health care costs, and quality of life for individual patients.

Study design and setting: Interpretive synthesis of the research literature on chronic disease and associated areas of clinical practice and service development. Searches of electronic databases (MEDLINE, EMBASE, and British Nursing Index), Internet searches, and snowballing techniques identified 66 relevant publications. The analysis focused on identifying mechanisms; their strengths, weaknesses, and impact.

Results: Ten mechanisms were identified, each with differing potential to access and reach patients; involve patients in decisions about what information is important; enable patients to share experiences/expertise and validate their knowledge; allow professionals and patients to deliberate and build understanding; support shared decision-making, continuity/partnership development, and potential to use patients' experiences. The extent to which patients' experiences led to improved outcomes, health care costs, or quality of life related to the aims of individual studies.

Conclusion: Patients can contribute to improving the design and delivery of chronic disease health care and research if appropriate mechanisms are in place. There is a need for future research about optimal configurations of mechanisms and links between mechanisms across health care and research.