“In sickness & in health”

1. “In sickness & in health” How do people look for health information? SHINE Study Day. March 2009

2. Looking for health information • 80% of people are likely to seek out information to learn how to cope with health problems Ellins and Coulter: How engaged are people in their healthcare?

3. Information needs Information sources and preferences Health on the internet How do people judge health websites? How can libraries help?

4. Information needs & information seeking: a body of evidence • Health literacy: being able to make the most of health by Sihota and Lennard. National Consumer Council 2004 • Accessing information about health and social services by Danielle Swain et al. • Assessing the quality of information to support people in making decisions about their health and healthcare by Angela Coulter et al.

5. Recall is “strikingly small” • 40-80% of medical information provided by healthcare practitioners is forgotten immediately

6. The need: People are different • Require information for different purposes • At different times/points in their journey • Broad range of information preferences

7. Diagnosis Tests and treatment Prognosis Services; including options & alternatives Self-care Further information – inc self-help groups Information about other sources of information Information for people close to them Patients may wish to find out about:

8. Common information needs • Voluntary groups • Support for family or carers • Services for specific conditions • Benefits • How to comment or complain

9. Timing • People want information just after diagnosis/taking on a caring role • People have difficulty assimilating information in the early stages of disease • Not everyone wants further information at all stages of an illness

10. Information sources & preferences

11. The ideal information source • Accurate, up to date, reliable - and practically useful • Accessible in language, format, and tone • Capable of customisation or personalisation • Available at different levels of detail • Informative about conditions as well as treatments • Covering beneficial & adverse effects of treatment • Linked to other reliable sources of information • Available at the time of a consultation

12. Finding out about services • Significant amount of information available • Not well signposted • Service users left to dig it out for themselves • Lack of co-ordination between information providers • Websites hold useful information; some are poorly designed • Telephone services friendly; may not lead to useful information • Both telephone lines and websites need to update their information regularly

13. Health on the internet • 70,000 + health related sites • Young people find the internet an appealing source • Yet for many patients, including “hard to reach groups”: • No familiarity with computers at all • Living in poverty

14. 21st century living • 57% population spend 5+ hrs per week online • preferred method of communication is face-to-face.

15. 21st century living 16 million households in Great Britain.65% Increase of just over 1 million households (7 %) since 2007 South East highest level of access, 74% North East the lowest access. 54% Most likely to have home access- adults under 70 with a degree or equivalent. 93% Least likely – those with no formal qualifications. 56%

16. Top three health issues • Women’s health • Alternative health • Diet

17. ... possibly the country's largest ever health snapshot Searches of NHS Direct. 2006 Chickenpox 111,800 Pregnancy 108,600 Thrush 90,000 Diabetes 83,000 Irritable bowel syndrome 70,400

18. Public favourites MensHealth.co.uk Most popular body & mind site CancerResearchUk.org Best non-profit UK website Womens-Health.co.uk Best mind and body site

19. For good or ill? • “The current evidence suggests that actual harm has been negligible to date, and over time benefits on a population basis could be substantial” Baur and Deering. Journal of Medical Internet Research 2001

20. How do people judge health websites? • Rapid search: rejecting those that are unattractive – with adverts – too general • Later influenced by credibility and perceived impartiality • Place particular trust in sites that closely reflect their own values

21. Winning trust • Ease of access to relevant information • Personalisation and social identity – input from other people with similar backgrounds/concerns • Credibility through impartiality • Credibility through professional design

22. Kitemarking New Information Accreditation Scheme • Reliability • Easier to find quality information • Quality improvement • Empowerment

23. Trust and reputation Who produced the site Purpose of the site Funding sources Date How the information is written Descriptions of conditions and treatments Medical research Personal experiences Foreign sites Communication Links Disclaimers Kite marks Design Interactive facilities

24. Internet vs traditional sources More traditional information sources, such as books and pamphlets “would probably be no better than those of the webs pages” when assessed against the standards of evidence-based patient information

25. How can libraries help? • The Public Library service has a major role to play in supporting patients to access information about their choice of hospital, probably in conjunction with local voluntary sector groups who can support very disadvantaged groups such as those whose first language is not English http://www.chooseandbook.nhs.uk/patients

26. The importance of equitable access • “Variation in access to information is ultimately disempowering: it reduces people’s ability to act promptly, and it erodes self-confidence and access to services impacting negatively on health.” Sihota and Lennard

27. Library users

28. How can librarians help? • Public librarians are well placed to act as community navigators for patients, using approaches targeted to their local communities • Health librarians have specialist knowledge to assist public library colleagues to handle queries outside their area of expertise

29. Issues for library staff? • The internet may be seen to make reference work less difficult • Perhaps some tensions amongst librarians: - providing reference services? - promoting self-service?

30. Looking ahead – the opportunity How best to extend the role of librarians in delivering high quality health information?