Bruinsma et al. BMC Public Health 2011, 11(Suppl 5):S7 http://www.biomedcentral.com/1471-2458/11/S5/S7 in term of study validity. A difference was found for the outcome depression, with higher rates found by the in- house interviewers and one interviewer in particular. Depression was collected using a standardised instru- ment, the CIDI. It is not possible to determine how much the differences were in the result of how the instrument was administered as opposed to differences in the characteristics of the women interviewed. More importantly, conducting the interviews in-house had some less quantifiable benefits. For some participants the interview was the first time they had discussed their experience of assessment or treatment with anybody and even though this wasn’t part of the CATI wanted to share this as well as sometimes seeking information about why certain examinations/tests were done. In- house interviewers were able to listen (without commer- cially driven time constraints) and appropriately respond to their stories or requests for information. This may also have broader long-term effects by providing women with a positive experience of participating in research, perhaps making them more likely to participate in other studies in the future. This experience illustrates the need for experienced research staff to conduct interviews that are of a sensi- tive and complex nature. This is important both for ensuring the quality and accuracy of the data collected but also in terms of providing a positive experience of research for participants. The need for staff training and debriefing should not be overlooked. Ethical issues The use of information from private medical records without individual consent for the purposes of research raises important legal and ethics issues [43,48]. As has already been mentioned the study required access to medical records held by private medical practitioners. The research team needed to balance obtaining data on long-term outcomes with not harming participants. For some women, the study brought back difficult memories and raised a topic that had previously been taboo within the family. The research team put together detailed pro- tocols regarding these issues. A small number of women (less than five) were concerned about how their details were obtained and these were immediately reported to the ethics committee and were successfully resolved. A more contentious issue was access to medical records. Some women had been trying unsuccessfully to access their medical record via the private practitioner and there was previous (and current at the time the study began) legal action between a small number of women and one medical practitioner. At the beginning of the study the research team investigated whether study data could be subpoenaed in litigation or whether data collected for the study could be accessed via a Page 6 of 8 Freedom of Information request. Examination of Victor- ian freedom of information legislation suggested that it may be possible but legal advice indicated that a request for an exemption could be made given that such a pre- cedent may jeopardise research more generally. The knowledge that we were able to access the records for research purposes prompted some women to ask us to provide them with the information. Many women could not remember what treatment they had received and were eager to know. This placed the research team in an unu- sual and difficult position: we had obligations to the medi- cal practitioners who were assisting us with our research, and to study participants [43]. After discussion with repre- sentatives of the primary medical practitioner concerned, and after legal advice and in line with the health privacy principles of the Victorian Health Records Act (2001), we developed a policy where women could be provided with a summary of the data that was abstracted from the medical record and also a summary of the data collected using the study instruments. If the woman wanted to see the medi- cal record or obtain copies of photos or other original material she needed to contact the representative of the relevant medical practitioner. In practice, less than 10 women requested access to their study records. Consumer collaboration The involvement of Tall Girls Inc. was crucial for a number of reasons. One reason why the study was being conducted was to address their concerns about the pos- sible adverse outcomes of treatment. Their support of the study was vital in terms of encouraging women to participate and promoting the study through their net- works and the media. The topic was particularly emotive for this group of women. However, as any one study is unable to answer all research questions, the research team felt the participation of Tall Girls Inc. in the research design process from the beginning to be impor- tant. This involved numerous and lengthy discussions about what the project could and could not do, as well as their input into study questions. While time-consum- ing, we believe that this investment of time and genuine involvement in the research process had dividends for both the research team and members of Tall Girls Inc. It ensured that the study questions were relevant. At the end of the study the group had more realistic expecta- tions about the findings and accepted them more read- ily. Some members of Tall Girls Inc reported to the research team that they found their involvement in the process to be empowering. While consumers and clini- cians were involved in the development of the study methodology and data collection instruments, the study was conducted independently of both stakeholder groups. Public health investigation intersects frequently with the community and community advocacy groups; a