The Declaration of Helsinki states that ‘Every precaution should be taken to respect the privacy of the subject and the confidentiality of the patient’s information’ (WMA 2000). Confidentiality is a key issue in research practice. For example, information gained from research must not be disclosed in other settings, such as through informal conversation.
In the OKIS interview study, we will audio-record interviews with patients and then the recording will be typed up or ‘transcribed’. The written accounts of interviews (transcriptions) do not contain any patient identifiers – names of people and places are removed when the audiotape is being transcribed. Each transcription is given a patient identifier, a code number, which means it cannot be linked to a person. Only the main study researchers have the ‘key’ to link the name of individual patients with the identification (ID) code. This helps protect confidentiality of patient data. Information from interviews is stored on the University of York’s password protected computer server and/or in locked filing cabinets in a locked room, in an area accessible only to university members of staff.
Confidentiality also relates to published accounts of the research, in which the identity of the research sites (where the research takes place) and individuals involved should be protected where possible. Names and other identifiers can be changed to protect the privacy of participants. For example, in a published paper, the researchers may refer to ‘‘hospital A’ and ‘hospital B’, situated in a large urban area in the North of England’.
Blogger: Dorothy McCaughan