Personal Experiences of Health and Illness on the Internet: Dipex International Collaboration and Healthtalk Australia (healthtalkaustralia.org)

Current research on health information seeking has identified the internet as an increasingly important resource. Other people’s stories of illness experiences found on websites are particularly valued. Growing use of such resources suggests that the online information based on other people’s experiences may help in making better informed decisions regarding one’s health and alleviate distress. Illness experiences, in the form of online stories, provide insight into living with illness, not just for patients but also for their family members / informal carers, friends, healthcare providers, and policymakers. Stories highlight strategies that others use to negotiate their everyday life and approach the future, and offer alternative sources of information about health services and activities that others found helpful or enjoyable. Well-presented stories can inspire, engage and improve individual lives and promote health in an emotionally meaningful way. Online health information based on the experiences of others is above all valuable for providing insight into living with an illness, and the complexities inherent in making decisions about health, other aspects of daily life, and self-care. A high quality online database of people’s stories of health and illness experiences has the potential to improve communication between healthcare providers and patients, building more cooperative and collaborative relationships. This presentation will discuss the DIPEx International (DI) research collaboration on health and illness experiences that includes universities in Australia, Europe, Canada, US and Asia, focusing in particular on the example of the Healthtalk Australia (http://healthtalkaustralia.org/). DI members, including Healthtalk Australia, use qualitative research methods developed by the Oxford University Health Experiences Research Group (HERG) to underpin the development of a unique online database of personal illness experiences. To date, the DI collaboration has resulted in almost 200 online resources or websites detailing experiences of health and illness in international context.