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Extracting information from hospital records: what patients think about consent

¹ Royal Devon and Exeter Hospital, Exeter, England
² Peninsula Medical School, Exeter, England

Correspondence to:
Professor Bruce Campbell, Royal Devon and Exeter Hospital (Wonford), Exeter EX2 5DW, England; bruce.campbell{at}nice.org.uk

ABSTRACT
Background and objective: There is increasing regulation and concern about the use of material from patients’ records. Studies on patients’ views have focused on primary care and on use of material for research. This study investigated patients’ preferences about whether and how doctors should seek permission for use of specified items of anonymised information from their hospital records for clinical audit, teaching, national data collection and research.

Method: A specially designed questionnaire sent to recently discharged patients under the care of medical and surgical specialists.

Results: 166/316 (53%) patients completed the questionnaires. The percentage of respondents who "definitely wanted" or "preferred" to be asked for permission for use of anonymised information was highest for medical history (21%) and reasons for treatment (20%). The purpose for which information was requested (eg, research, audit) made little difference to the overall percentages (range 10–12%). 21 (13%) patients "definitely wanted" to be asked for permission for use of some item or proposed use of information—most had no preference or preferred not to be asked. The most popular method for asking permission was signing a form while in hospital, rather than by specific requests later.

Conclusions: Most hospital patients have no preference or prefer not to be asked permission for doctors to use information from their records. About 1 in 8 patients would like to be asked for permission, some even for clinical audit of outcomes—although a minority, this could compromise thorough clinical audit. Systems for obtaining permission when patients are admitted to hospital need to be considered. Resolution of uncertainties surrounding legislation on the use of information would be helpful to clinicians.