Abstract

Context: The need to reinvigorate medical confidentiality protections is recognised as an important objective in building patient trust necessary for successful health outcomes. Little is known about patient understanding and expectations from medical confidentiality.

Objective: To identify and describe patient views of medical confidentiality and to assess provisionally the range of these views.

Design: Qualitative study using indepth, open ended face-to-face interviews.

Setting: Southeastern Pennsylvania and southern New Jersey, USA.

Participants: A total of 85 women interviewed at two clinical sites and three community/research centres.

Main outcome measures: Subjects’ understanding of medical confidentiality, beliefs about the handling of confidential information and concerns influencing disclosure of information to doctors.

Results: The subjects defined medical confidentiality as the expectation that something done or said would be kept “private” but differed on what information was confidential and the basis and methods for protecting information. Some considered all medical information as confidential and thought confidentiality protections functioned to limit its circulation to medical uses and reimbursement needs. Others defined only sensitive or potentially stigmatising information as confidential. Many of these also defined medical confidentiality as a strict limit prohibiting information release, although some noted that specific permission or urgent need could override this limit.

Conclusions: Patients share a basic understanding of confidentiality as protection of information, but some might have expectations that are likely not met by current practice nor anticipated by doctors. Doctors should recognise that patients might have their own medical confidentiality models. They should address divergences from current practice and provide support to those who face emotional or practical obstacles to self-revelation.