Patient issues in health research and quality of care: an inventory and data synthesis.

AIM: The purpose of this review is to generate an inventory of issues that matter from a patient perspective in health research and quality of care. From these issues, criteria will be elicited to support patient(s) (groups) in their role as advisor or advocate when appraising health research, health policy and quality of health care.
BACKGROUND: Literature shows that patients are beginning to develop their own voice and agenda's with issues in order to be prepared for the collaboration with professionals. Yet, patient issues have not been investigated systematically. This review addresses what patients find important and help to derive patient criteria for appraising research and quality of care. METHODS/SEARCH STRATEGY: Information was gathered from Western countries with similar economic, societal and health-care situations. We searched (from January 2000 to March 2010) for primary sources, secondary sources and tertiary sources; non-scientific publications were also included.
RESULTS: The international inventory of issues that were defined by patients is covering a large array of domains. In total, 35 issue clusters further referred to as criteria were found ranging from dignity to cost effectiveness and family involvement. Issues from a patient perspective reveal patient values and appear to be adding to professional issues.
CONCLUSIONS: Patient issues cover a broad domain, including fundamental values, quality of life, quality of care and personal development. Quite a few issues do not find its reflection in the scientific literature in spite of their clear and obvious appearance from tertiary sources. This may indicate a gap between the scientific research community and patient networks.