Improving Health Information for Rare Disease Patients and Caregivers: A Survey of Preferences for Health Information Seeking Channels and Formats

ABSTRACT Understanding rare disease patients’ and caregivers’ health information-seeking behavior is essential for creating useful resources. Due to the rarity of the diseases, available information can be scarce and lead to non-traditional, untrustworthy sources. A survey of 136 RASopathies caregivers was conducted via social media. The findings indicate that health information needs pertained to information about specialized medical practitioners and self-care support, while preferred information formats included visual media like images and links to helpful health articles. Caregivers were less interested in physical or print resources related to health and medical conditions when compared to digital resources and social media health information. Parents were more likely to share peer-reviewed or vetted health articles as opposed to media reports and other sources that may be more prone to disseminating fake news or disinformation about rare health conditions. This study has implications both for information professionals and eHealth professionals.