A RARE DISEASE PERSPECTIVE: UNDERSTANDING THE RELATIONSHIP BETWEEN ONLINE HEALTH INFORMATION SERVICES, HEALTH ANXIETY, AND TRUST
Abstract
Approximately 30 million people in the EU, which equates to 1 in 15 people, have been or will be affected by a rare disease. Rare disease patients are often misdiagnosed or undiagnosed, likely due to their health care providers’ lack of knowledge and experience with rare diseases. Therefore, rare disease patients may be more inclined to research into their health than the general public. A popular method of looking into health information is through online and digital health information services. These services can empower patients to take greater control of their health; however, they can also increase health anxiety and harm users’ emotional state. Therefore, a few researchers have considered how to reduce the effects online health information services have on health anxiety. However, while people often talk about the worried well when considering health anxiety, they may unknowingly neglect the worried unwell. While it is important to reduce unfounded health concerns in order to promote patients’ wellbeing, it is also important that it does not prevent those who are unwell from acting on the information found.
This study will analyse methods of reducing health anxiety and evaluate whether these methods prevent users from seeking their health care providers. Furthermore, the experiences of rare disease patients regarding online health information will be contrasted and compared to the experiences of the general public. This will be done using a questionnaire and three interviews analysed thematically. Findings showed a number of effective design concepts to reduce health anxiety without preventing action. The most promising design concepts proposed are firstly detecting and down weighting escalatory web- sites from search results. Secondly. the use of visual analytics such as graphs reduces health anxiety caused by confusion. Finally, listing symptoms such that symptoms inputted present the resulting condition as more likely while symptoms not inputted (which are associated with that condition) present the condition as less likely reduces health anxiety by encouraging balanced thinking.