“In sickness & in health”

How do people look for health information?

SHINE Study Day.

March 2009

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?

Looking for health information

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

Information needs & information seeking: a body of evidence1. Health literacy: being able to make the

most of health by Sihota and Lennard. National Consumer Council 2004

2. Accessing information about health and social services by Danielle Swain et al.

3. Assessing the quality of information to support people in making decisions about their health and healthcare by Angela Coulter et al.

Recall is “strikingly small”

40-80% of medical information provided by healthcare practitioners is forgotten immediately

The need: People are different

Require information for different purposes

At different times/points in their journey

Broad range of information preferences

Patients may wish to find out about:

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

Common information needs

Voluntary groups Support for family or carers Services for specific conditions Benefits How to comment or complain

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

Information source National survey Wrexham

Internet/website 30% 54%

Leaflets or books 23%

Leaflets 42%

Books 27%

Family and friends 19% 35%

Newspapers/magazines 18% 25%

Pharmacist 6% 58%

Patient organisations 4%

Television or radio 4%

Advertisements 1%

Library 11%

Information sources & preferences

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

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

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

21st century living

57% population spend 5+ hrs per week online

preferred method of communication is face-to-face.

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%

Top three health issues

1. Women’s health

2. Alternative health

3. Diet

... 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

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

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

How do people judge health websites?

1. Rapid search: rejecting those that are unattractive – with adverts – too general

2. Later influenced by credibility and perceived impartiality

3. Place particular trust in sites that closely reflect their own values

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

Kitemarking

New Information Accreditation Scheme

Reliability Easier to find quality

information Quality improvement Empowerment

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

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

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

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

Information need Rotherham survey

Location and opening hours of local health services

63%

Sources of support for carers 57%

Diet, nutrition, exercise 54%

Common conditions, diseases and their treatments

54%

Local travel arrangements 52%

Information about the performance of NHS services

52%

Library users

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

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?

Looking ahead – the opportunity

How best to extend the role of librarians in delivering high quality health information?