Abstract
This chapter examines the issues of information literacy for both health professionals and patients in the context of rare and orphan diseases. In particular, the chapter uses a real life case study to consider the information experience of a person in the early stages of a rare condition, both pre and post diagnosis. It also reviews the information experience of the health professionals responsible for their care. The chapter addresses common barriers to information literacy such as lack of information, lack of information skills and difficulties associated with accessing information. Behaviour related to information pre and post diagnosis is also discussed in this chapter, together with the current role of health 2.0 as the provider of both information and emotional support for people with rare diseases. Areas currently being given consideration for future coordination are briefly reviewed as part of the development of information literacy in rare and orphan diseases.
We read to know we are not alone
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Spring, H. (2014). Health 2.0 and Information Literacy for Rare and Orphan Diseases. In: Bali, R., Bos, L., Gibbons, M., Ibell, S. (eds) Rare Diseases in the Age of Health 2.0. Communications in Medical and Care Compunetics, vol 4. Springer, Berlin, Heidelberg. https://doi.org/10.1007/978-3-642-38643-5_11
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DOI: https://doi.org/10.1007/978-3-642-38643-5_11
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