Patients' involvement in improvement initiatives: a qualitative systematic review.

BACKGROUND: Over the last 20 years, quality improvement in health has become an important strategy in health services in many countries. With the emphasis on quality health care, there has been a shift in social paradigms towards including service users in their own health on different levels. There is growing evidence in literature on the positive impact on health outcomes where patients are active participants in their personal care. There is however less information available on the broader influence of users on improvement in systems.

OBJECTIVES: The objective of this review was to identify the barriers and enablers to patients being involved in quality improvement efforts directed towards their own health care.

INCLUSION CRITERIA: This review considered studies that included adults and children of any age experiencing any health problem.The review considered studies that explored patient or user participation in quality improvement and the factors enabling and hindering this processThe qualitative component of this review considered studies that focused on qualitative data, including, but not limited to, designs such as phenomenology, grounded theory, ethnography, action research and feminist research. Other texts such as opinion papers and reports were also considered.

SEARCH STRATEGY: The search strategy aimed to find both published and unpublished studies. A three-step search strategy was utilized in this review. The searches using all identified keywords and index terms included the databases PubMed, PsycINFO, Medline, Scopus, EBSCOhost and CINAHL.Qualitative, text and opinion papers were considered for inclusion in this review.Closely related concepts like community involvement, family involvement, patients' involvement in their own care (for example, in the case of shared decision making), and patient centeredness in the context of a consultation were excluded.

METHODOLOGICAL QUALITY: Qualitative and textual papers selected for retrieval were assessed by two independent reviewers for authenticity prior to inclusion in the review using the standardized critical appraisal instruments from the Joanna Briggs Institute.

DATA EXTRACTION: Qualitative and textual data were extracted from papers included in the review using the standardized data extraction tool from the Joanna Briggs Institute.

DATA SYNTHESIS: The above findings were pooled and through the identification of categories, a final meta-synthesis was formulated.

RESULTS: Two synthesized findings were created from the included papers. Firstly, there are barriers to patients' participation in quality improvement in health and in spite of policy support for user involvement in quality improvement, it is a difficult strategy to implement. The second synthesized finding was that there are enablers to patients' involvement in quality improvement: when patients are involved in quality improvement efforts in health care, there are innovative, often unexpected, outcomes at different levels of the process, and sustaining these efforts is possible with ongoing individual or group support.Five categories which supported the synthesized findings were created through the meta-aggregative process.

CONCLUSIONS: There are enablers and barriers to involving patients in quality improvement in health care that need to be considered when planning such interventions.Relationships and roles will need to be very clear from the outset. A developmental approach needs to be considered where support and training is part of the project. Where patients are truly engaged in service improvement, unexpected innovation occurs.There are many more reports and opinion papers published regarding this topic than there are rigorous research studies. This leaves the field open to the development of good methodological studies related to quality improvement and in particular to the participation of patients.