Critical experiences: Peer review in online consumer health communications

OBJECTIVE There is much literature questioning the reliability and validity of internet-based information relating to health, including calls for an analysis of gaps between evidence-based medicine and health information on the internet. The literature spans various disciplines including public health, information studies and sociology of health. While some of the literature relates to specific illnesses, health conditions or social groups, there are gaps in understanding what people who seek online health information are actually doing when they visit various websites, and how their information practices change over time. There is also little consideration given to differences in information practices relating to acute and chronic health conditions. The presentation will report research findings from exploratory research into internet-based information practices of people with hepatitis C. In particular it investigates strategies, as deployed by this group of health consumers, for appraising information relating to clinical and everyday aspects of living with hepatitis C. METHODSThe cross-sectional study, an exploratory investigation of information practices of people with hepatitis C, comprises quantitative and qualitative research methods deploying, respectively, an internet-based survey and face to face interviews, for data collection. The survey and interview data were generated simultaneously. Ninety-one respondents completed the survey. People who responded to the survey were asked to volunteer for a follow-up, face-to-face, semi-structured interview. Twenty people, from the Australian states of New South Wales, Victoria and Western Australia, were interviewed. RESULTSThe presentation provides findings from both quantitative and qualitative data, with interview data drawn from eleven of the interviews, limited to participants who received their hepatitis C diagnosis between 1997 and 2003. Multiple Correspondence Analysis (MCA) was applied to the survey data to provide an overall picture of relationships between various information practices of the respondents, including the strategies they use to appraise information. Analysis of the data indicates different patterns of practices for appraising information, between people who mostly visit official government or health organisation websites and those who engage interactively with peers, in chatrooms and other online fora. The findings are supported by qualitative data, with interview participants reporting a range of strategies for making judgments relating to the quality of information they have found on the internet. Many participants expressed a preference for Australian material and, in particular, that recommended by the Hepatitis C Council of NSW, a consumer-based organisation. Others made decisions based on communications in a popular online forum for people with hepatitis C, in which information was discussed and critically evaluated among peers.CONCLUSIONS The exploratory study shows that methods for appraising internet-based health information need to be understood, by medical and other health and information professionals, on the basis of research about what particular groups of health consumers are actually doing when they go online to look for information. Analysis of gaps between evidence-based medicine and health information on the internet will be greatly enhanced by analysis of practices of health consumers in relation to the information