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