Potential harms associated with routine collection of patient sociodemographic information: A rapid review

Background Health systems are recommended to capture routine patient sociodemographic data as a key step in providing equitable person‐centred care. However, collection of this information has the potential to cause harm, especially for vulnerable or potentially disadvantaged patients. Objective To identify harms perceived or experienced by patients, their families, or health‐care providers from collection of sociodemographic information during routine health‐care visits and to identify best practices for when, by whom and how to collect this information. Search Strategy We searched OVID MEDLINE, PubMed “related articles” via NLM and healthevidence.org to the end of January 2018 and assessed reference lists and related citations of included studies. Inclusion Criteria We included studies reporting on harms of collecting patient sociodemographic information in health‐care settings. Data Extraction and Synthesis Data on study characteristics and types of harms were extracted and summarized narratively. Main Results Eighteen studies were included; 13 provided patient perceptions or experiences with the collection of these data and seven studies reported on provider perceptions. Five reported on patient recommendations for collecting sociodemographic information. Patients and providers reported similar potential harms which were grouped into the following themes: altered behaviour which may affect care‐seeking, data misuse or privacy concerns, discomfort, discrimination, offence or negative reactions, and quality of care. Patients suggested that sociodemographic information be collected face to face by a physician. Discussion and Conclusions Overall, patients support the collection of sociodemographic information. However, harms are possible, especially for some population subgroups. Harms may be mitigated by providing a rationale for the collection of this information.