Carol S Bond*, Bournemouth University, Bournemouth, United Kingdom Jaqui Hewitt-taylor, Bournemouth University, Bournemouth, United Kingdom Track: Practice Presentation Topic: Ethical & legal issues, confidentiality and privacy Presentation Type: Oral presentation Submission Type: Single Presentation Building: LKSC Conference Center Stanford Room: Lower Auditorium 130 Date: 2011-09-18 03:00 PM – 04:30 PM Last modified: 2011-08-15

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People living with enduring health conditions (EHC) are increasingly turning to social networking websites to share their experiences, and to both offer and seek help and advice from fellow ‘sufferers’. As well as the primary purpose of enabling interaction between people living with an EHC, many of these websites contain material of potential use to researchers. Accessing information from individuals for research purposes has traditionally meant inviting people to participate in information gathering activities, gaining consent to participate and advising participants about anonymity and confidentiality. This process of seeking consent and outlining the boundaries of the use of data is carried out before the participant makes information available to the researcher. However, the situation is somewhat different when a researcher considers using internet discussion boards. How the established principles of ethical research can or indeed should be applied to research happening in the ‘online world' rather than the ‘real world' is a challenge to researchers. This abstract explores the issues through consideration of research with discussion board data. In 2001 Eysenbach and Till reviewed health related discussion boards and concluded that members of internet communities do not expect the posts they make to be used by researchers. They identified that the rise of what we now call social networking is creating a blurring of public and private spaces. This research however was carried out before social networking became the everyday activity that it now is for many people. Around the same time (2002) the Association of Internet Researchers questioned whether people contributing in this environment are best understood as research subjects or as authors whose texts are intended as public writing. Without any agreed framework to draw on researchers are making their own decisions about how to address the ethical issues. To help illustrate the current situation a brief review of articles that used data from online discussion boards was undertaken to explore the range of approaches being adopted by researchers. Some did not mention any ethical considerations in the research. Of those that did a variety of approaches were found. These included asking the operators of the site for permission to use data from the site for research; approaching formal ethics committees; not seeking consent or approval; acting ethically in self defined ways. People approaching ethics committees received a range of responses, including a decision that approval was not required, approval with limitations, and approval as sought. Some authors discussed the thinking behind their approach and gave a rationale. Considerations include the public nature of the board, not using participants’ nicknames and not using any direct quotes from participants. The importance of this latter point is reinforced by one of the reviewed articles where it was possible to identify the discussion board and the online ID of the author through the use of the Google advanced search feature. The issues are complex. Ethics review committees and neophyte researchers need more guidance. The people who are at this conference may be well placed to further the debate.