Background: Guidelines for developing written patient information materials recommend involving patients/consumers, healthcare professionals and others with experience in the area to ensure information is comprehensive and relevant.

Purpose: To determine whether groups involved in developing a written information material for women with breast symptoms agree on essential content.

Method: Breast cancer advocates, breast physicians, breast surgeons, general practitioners, people with an interest in bioethics, and women who had recently undergone diagnostic breast tests participated in the study. Participants completed a questionnaire eliciting demographic information, and their views on what information should be given to symptomatic women and when it should be provided. Questionnaire content was derived from interviews with women from the community and relevant literature, with input from physicians, advocates, an epidemiologist with expertise in test evaluation, and researchers in communication.

Results: None of the 52 information items were rated essential by 100% of participants overall or within any participant group. The percentage of people nominating a specific item as essential varied from 15% to 71% over all study participants, 26% to 87% for advocates, 5% to 85% for physicians, 7% to 77% for surgeons, 3% to 67% for general practitioners, 19% to 81% for bioethicists, and 28% to 84% for women (preliminary results for women). Most participants said women should be given “basic” but “not too much” information, with additional information given in response to patient questions. Participants held contradictory assumptions regarding the basis on which to provide information, with age, education, personality, and anxiety level said to influence the information women can understand and should receive, but an individual approach seen as necessary to prevent overwhelming patients.

Conclusions: Ensuring written patient information materials contain comprehensive and relevant information is not a simple matter of involving patients/consumers, healthcare professionals and experienced others. The results of this study clearly show that the perception of basic (essential) information is highly individualised and that advocates, bioethicists, healthcare professionals, and women hold seemingly contradictory assumptions regarding the provision of information to patients. People involved in the development of patient information materials need to be explicit in their meaning when they use terms such as “basic information”. Such terms do not have the shared meaning implied by their use, without explanation, in guidelines and literature.