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Information literacy when there is no information: the case of rare and orphan diseases - Hannah Spring


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Information literacy when there is no information: the case of rare and orphan diseases - Hannah Spring

  1. 1. Information literacy when there is no information: the case of rare and orphan diseases LILAC Conference: 25th April 2014 Dr Hannah Spring Senior Lecturer: Research and Evidence Based Practice Support York St John University |
  2. 2. York St John University | Background • Presentation is based on the following book chapter: • 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. London: Springer, pp. 101-113 • Book focusses on various factors associated with orphan diseases and the influence and role of health information and technologies
  3. 3. Rare Diseases • What are rare diseases? • “Life threatening or chronically debilitating diseases affecting fewer than 5 people in 10,000” (European Commission on Public Health, 2013) • Often not prioritised for research funding • Cost of developing drug treatments often not seen by national and international Government as justifiable • ‘Orphan Disease’ is therefore a term often used interchangeably with ‘Rare Disease’
  4. 4. York St John University | Information Challenges • European Commission on Public Health (2013) outlines the following priorities for rare diseases: • Ensuring that rare diseases are adequately coded and traceable in all health information systems • Creating European reference networks linking centres of expertise and professionals in different countries to share knowledge and identify where patients should go when expertise is unavailable in their home country • Encouraging more research into rare diseases
  5. 5. York St John University | Cluster Headache • A debilitating condition presenting as sudden onset of severe and intense head pain • Attacks come in ‘clusters’ • Treatment includes daily injections, and oxygen • Not life threatening but has a severe impact on quality of life • Very unpredictable • Not well understood • Underdiagnosed, and often misdiagnosed as migraine • Also termed ‘suicide headache’ • Only charitable organisation is OUCH UK • Not officially classified as a rare disease, but it has all the characteristics
  6. 6. York St John University | Annie’s Story
  7. 7. York St John University | Annie’s Story “Although it would ease off at times, it always came back. The pain would just not go away. All I wanted was to make it stop and it seemed like no one was able to help me”.
  8. 8. York St John University | Annie’s Story “I thought perhaps the GP thought it was all psychological and perhaps imagined. It was awful. I felt so helpless and not in control of the situation at all. I felt as if I was at the mercy of a load of supposedly health professionals who didn’t understand, weren’t listening and didn’t believe me…. and all the while these attacks of pain were still happening to me”
  9. 9. York St John University | Annie’s Story “All the information was really dramatic and scary. It was all about people suffering from cluster headaches killing themselves! I am a practical person and I needed good, sound information, not dramatic stories”. “The lack of information and a diagnosis was so stressful”.
  10. 10. York St John University | Annie’s Story “The GP told me I didn’t need a referral. She had never heard of cluster headaches. She just wanted to give me migraine tablets and insisted that’s all it was. It was a nightmare”.
  11. 11. York St John University | Annie’s Story “It was amazing. I just kept telling them ‘my head hurts, it really hurts’, and ‘tell me how I can make it stop’. It was the first time that someone acknowledged with complete understanding that ‘yes, it does hurt’ and ‘yes, it is dreadful and unbearable’. I was so relieved. It felt good to finally be listened to and believed. I cried a lot”.
  12. 12. Annie’s Story “OUCH gave me back control. They gave me a step-by-step course of action and I felt like ‘I know what to do now’. I felt empowered because at last I had the information I needed to really do something about it”. “It wasn’t so much ‘what is wrong with me?’ anymore, but more, ‘OK, so how do I manage this condition?’ I needed different information now”. “You would assume you’d get the right information from the GP, but in actual fact, in the early stages it was the OUCH web site that got me there. But what about people without information access or skills? I can see why some people might feel suicidal”.
  13. 13. Discussion •Patients rely heavily on health professionals as an information source (Carpenter et al, 2011; Kuehn, 2011; Cegala et al, 2008; Sen and Spring, 2013) •Those satisfied with care and quality of communication from their physician are less reliant on the internet for health information (Tustin, 2010) •Regardless of level of information literacy, lack of diagnosis can affect the ability of a patient to find information
  14. 14. Discussion •Horses and Zebras • “If you hear hoof beats, think horses, not zebras” (Beale, 2011, p312) • Most disease states are common ones, and most patients are typical • Key reason why rare disease often take a long term to reach diagnosis • ‘Zebra’ patients tend to bounce from specialist to specialist until GP throws hands in air and shifts focus from searching for a diagnosis to symptom control •If a complex or rare disease has common symptoms (eg. headache) • Finding a needle in a haystack • Potential for finding incorrect information increases
  15. 15. Discussion •Googling for a diagnosis – the case of the purple urine! • “Everything could be found on the web if only one knew the correct search terms” (Tang & Ng, 2006, p1143) • Specialist knowledge also helps (identify keywords and select relevant information) •Cegala et al (2008) observed a sharp increase in internet use by patients after they had been diagnosed – pre- diagnosis, internet access levels were very low •Diagnosis arms the patient with keywords!
  16. 16. Discussion •The potential for oft criticised open access sources like Wikipedia have greater power in the realms of rare diseases • Small levels of high expertise •Web 2.0 revolutionary • 24-7 worldwide communities of support • Emotional support • First-hand experiences of others • Information giving (donors)
  17. 17. York St John University | Annie’s Experience
  18. 18. Lessons for Librarians • Opportunity for librarians to apply broad based search strategies to identify unusual causes of common symptoms and publish them for use by clinicians • Be aware of the journey – the information experience is different for people with rare diseases • Good ‘information health’ plays an important role in supporting people cope with illness (Sen & Spring, 2013) • In the case of rare diseases, it might not always be that people do not have information skills, it might just be that there isn’t any information!
  19. 19. York St John University | Reference List • Beales DL. (2011) Beyond Horses to Zebras: Sicca Syndrome. Journal of Hospital Librarianship.11(4):311-24. • Carpenter DM, DeVellis RF, Hogan SL, Fisher EB, DeVellis BM, Jordan JM. (2011) Use and perceived credibility of medication information sources for patients with a rare illness: differences by gender. Journal Of Health Communication. 16(6):629-42. • Cegala DJ, Bahnson RR, Clinton SK, David P, Gong MC, Monk JP. (2008) Information seeking and satisfaction with physician-patient communication among prostate cancer survivors. Health Communication. 23(1):62-9. • European Commission on Public Health. (2013). Rare diseases: policy: European Commission on Public Health [Online]. Available from: (Accessed 15th April 2014) • Kuehn BM. 2011. Patients go online seeking support, practical advice on health conditions. JAMA. 305(16):1644-5.
  20. 20. York St John University | Reference List •OUCH (UK). (2014) Organisation for the understanding of cluster headache (UK) [Online]. Available from: (Accessed 15th April 2014) •Sen B, Spring H. (2013) Mapping the information-coping trajectory of young people with long term illness: an evidence based approach. Journal of Documentation. 69(5):638-66. •Tang, H., Ng, JHK. (2006) Googling for a diagnosis: use of Google as a diagnostic aid: internet based study. BMJ, 333, 1143-5 •Tustin, N. (2010) The role of patient satisfaction in online health information seeking. Journal of Health Communication, 15, 3-17