Patients' views on the effectiveness of patient-held records: a systematic review and thematic synthesis of qualitative studies.

Abstract

To synthesise the views of patients on patient-held records (PHR) and to determine from a patient's perspective the effectiveness and any benefits or drawbacks to the PHR. Systematic review and thematic synthesis of qualitative studies, which investigate the perspective of patients on the effectiveness of the PHR. Medline, CINAHL, PsychINFO, PubMed, Cochrane. Systematic review of literature relevant to the research question and thematic synthesis involving line by line coding of the quotations from participants and the interpretations of the findings offered by authors. Ten papers that reported the experiences of 455 patients were included in the thematic synthesis. Five studies focused on cancer care, two on mental health, one on antenatal care, one on chronic disease and one on learning disability. The completeness of reporting was variable. Three main themes were identified: (i) practical benefits of the PHR (having a record of one's condition, an aide memoire, useful information source and tool for sharing information across the health system); (ii) psychological benefits of the PHR (empowered to ask questions, a place to record thoughts and feelings and feeling in control); and (iii) drawbacks to the PHR (PHR imposes unwanted responsibility and ineffectiveness). The effectiveness of the PHR is largely dependent upon uptake across the health system from patients and health-care providers alike. Robust qualitative studies are needed, which offer more complete reporting and examine what patients want and need from a PHR.