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Web sites for health

Health consumers are concerned about information on the Internet. They want to know if information is:

  • fraudulent;
  • produced by a crank;
  • safe;
  • correct.

The Internet increases your access to health information.

  • There is a large amount of information available, much of it of good quality from reputable sources.
  • It is available 24 hours a day, 7 days a week, and never takes a holiday.
  • You can look at sites from other countries and find out about literature, drugs and treatments not available in the UK.
  • For rare conditions particularly, it enables people to get in touch with each other.

However, along with these benefits, the Internet does bring problems and dangers.

  • There is so much information you can get overwhelmed.
  • The information is not provided in a controlled, paced way.
  • You can see information aimed at health professionals as well as at the public.
  • You can find out frightening facts.
  • Anyone can put up their own Web site, including cranks and fraudsters.
  • If you are ‘vulnerable’ you can fall into the trap of believing everything you read, for example:
    (a) everything you read about a condition is actually going to happen to you or the person you care for.
  • There is no person to discuss the information with as you receive it.

Good quality information can help you:

  • cope with and manage your condition;
  • care for someone with a condition;
  • live a healthy lifestyle.

But information can also put pressures on you.

  • It can provide frightening facts about a life threatening or life limiting condition;
  • It can lead to guilt that the condition is some how ‘your fault’ if it is genetic or contributed to by certain lifestyles;
  • It can lead to feeling ‘forced’ to find information or join campaigns to raise money for a ‘cure’.

Hopefully the Judge project guidelines will help you to find, judge and use health information from the Internet.

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How the guidelines were produced

The research was carried out by the Project Officer, Sue Childs, IMRI.

It consisted of six stages.

1. Collecting background information, by:

  • a review of the literature on quality issues and health information on the Internet;
  • a review of quality guidelines, and how they could be used to assess voluntary sector Web sites.

2. Obtaining health consumers’ views on quality issues and concerns about health information on the Internet and any help they needed, by:

  • a postal questionnaire survey of health consumers;
  • focus groups with health consumers and support group members and workers.

3. Writing the guidelines, by:

  • using the information gained from the first two stages.

4. Piloting the guidelines, by:

  • making them available as a basic Web site;
  • individual health consumers using the consumer guidelines with the Project Officer and making comments;
  • individual support groups, who were setting up a Web site, using the support group guidelines with the Project Officer and making comments;
  • asking for comments from organisations and professionals active in health information provision.

5. Developing a Web site to disseminate the guidelines, by:

  • collaborating with Kay Humphrey from the Centre for Health Information Quality. Kay designed, tested and set up the site;
  • designing a simple, accessible, usable Web site;
  • testing the site against a wide range of accessibility guidelines;
  • setting up a free-access site with its own domain name.

6. Publicising the Web site, by:

  • sending details to a wide range of organisations;
  • officially launching the guidelines with press releases;
  • submitting the Web site to search engines and gateways.

Publications produced

The project has resulted in a number of published journal articles:

  • Childs S (2005). Judging the quality of Internet-based health information. Performance Measurement and Metrics, 6(2):80-96
  • Childs S (2004). Developing health web site quality assessment guidelines for the voluntary sector: Outcomes from the Judge project. Health Information and Libraries Journal, 21(Suppl 2):14-26
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Judge: web sites for health

The medical research literature is very complex. You would need specialised knowledge of the subject, the scientific methods used and the terminology to be able to understand it fully.

The nature and strength of science is in debate. Scientists test and challenge each others’ work until they reach agreement. This approach is very powerful at building up knowledge and understanding. However, it is not helpful or comfortable for the health consumer looking for certainty, for example:

  • a piece of work can be out of date, overtaken by further research;
  • experts can have different opinions about the research;
  • professional advice can vary between different countries;
  • some researchers’ ideas can be at odds with the usual opinion.

Many support groups use medical advisers to check the medical information they provide.

Some support groups cover research on their Web sites or through their newsletters.

< previous page: conditions  |   next page: experiences >

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Judge: web sites for health

Good Web site design covers the following issues:

  • accessibility;
  • usability;
  • appearance.

Plan out your design on paper first.

  • Think about what information you want to include in your site. The section in these guidelines on ‘How to produce good quality information’ will provide suggestions.
  • How will the different sections of information be logically connected to each other? This helps you to think how the site’s navigation will be organised.
  • Look at the following pages in this ‘How to design good quality Web sites’ section. (a) Some of the pages give quite detailed advice for people with more computer expertise who are producing their own sites. (b) Also look at the other guides to Web design listed below for further details. (c) If someone else is producing the Web site for you, these pages will help you discuss the design requirements with them.
  • A Web site can be built up gradually, as long as you leave places in your design to build in future sections

When planning the design of your site, think about your users and make it simple, obvious, and helpful.

Look at other Web sites. What do you think is good about them? What is unhelpful or poor?

There are many sites that provide advice on good Web design. Here are some examples.

< previous page: practicalities  |   next page: accessibility >

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Judge: web sites for health

Information should be up to date.

Information should be balanced:

  • it should discuss different sides of an issue;
  • it should not be sensational;
  • it should not make extreme statements or extravagant claims.

Information should be written with correct grammar and spelling.

Many sites are aimed at health professionals, lecturers and researchers, not the health consumer. Therefore they will use specialised language.

Where sites are aimed at health consumers, the information should be simply written, easy to understand, with no medical jargon. When medical terms are used a glossary should be given so you can find out what these terms mean.

If you want to look up computing or medical terms there are online dictionaries you can use, for example:

Information should be written so it is accessible to the disabled.

If the site is targeting groups with a first-language other than English, it might be appropriate for information to be provided in those languages as well.

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Judge: web sites for health

© Copyright for this site is held by Contact a Family and the Information Society Research and Consultancy Group, School of Computing, Engineering and Information Sciences, Northumbria University. Site published February 2003. Last updated October 2006. Review date October 2007.

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Judge: web sites for health

The sources of funding for the organisation and site should be clear. For charitable organisations look at sections like ‘How you can help’.

If the organisation is a registered charity it should give its registered charity number. It should give details of its accounts and annual reports on the site too.

Any items for sale should be clearly stated as such. The price and the method of payment should be given.

Any organisations or individuals sponsoring the site should be listed.

  • Be cautious of sites sponsored by, for example, pharmaceutical or medical product companies.

Where sponsors are not listed, do not assume that the site is not sponsored.

  • If a site does not accept sponsorship it should say so.

When adverts are used it should be obvious that they are an advert. The types of adverts accepted by a site could give you some indication of its potential bias.

< previous page: purpose  |   next page: date >

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Judge: web sites for health

There are two levels to judging the quality of this medical information.

First level

The first level looks for the presence of quality criteria which indicate that the information is likely to be reliable. This type of judgment can be carried out by anybody.

  • The name of the author, with the reasons why you should trust what they have written, for example, their job title, place of work, formal qualifications.
  • Any potential conflicts of interest, for example, if the researcher is funded by a pharmaceutical company.
  • The date the information was written, with an update or review date. (a) Some information, like the description of a disease, does not change very much. However it should be reviewed on a regular basis, for example, yearly, to check that it is still correct.
  • The sources of the information the author used to write their section, for example: (a) references to the literature; (b) links to other Web sites (and the dates they were accessed); (c) the author’s knowledge and experience.
  • Contact details of the author so you can check up on the information and query it
  • Links to related resources so you can read other opinions and look at other research.

There should be a section that describes any quality checks or editorial processes that information goes through before it is placed on the site.

However, even when these quality criteria are followed by a site, there is still no guarantee that their information is correct.

One approach to help identify correct information is to look at a range of sites and note areas of agreement.

Second level

The second level involves a detailed assessment of the correctness of the information. This can only be done by a health professional or a lay-expert.

  • A lay-expert is a member of the public, often a patient or carer, who has spent a lot of time reading and learning about a specific medical condition. They can know as much about this small area of medicine as some health professionals.
  • Some support groups are sources of lay-experts so contact them for further help.

< previous page: how written  |   next page: research >

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Judge: web sites for health

An accessible, usable site can also be attractive and pleasing to the user.

Design classics are often simple, for example, the Google Web site (http://www.google.co.uk) [Opens in new browser window].

Attractiveness is personal and subjective. Look at other sites for ideas and suggestions.

< previous page: usability  |   next page: testing >

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Judge: web sites for health

Web sites are produced for many different purposes and reasons and by many different types of organisation, as well as by individuals, for example:

  • professional organisations, such as universities, hospitals;
  • support groups, ranging from big national charities to small, local groups;
  • government departments like the Department of Health;
  • commercial organisations, selling health care products or services;
  • individuals: (a) a medical researcher;

    (b) a person suffering from a condition, or a carer of such a person, who has described their own experiences and views.

Be more cautious of information in:

  • commercial sites, as their main purpose is to sell something not to inform or educate;
  • individual patient or carer’s sites, particularly the medical information as there is a chance it could be incorrect.

Information provided by the Web address can also tell you what type of organisation has produced the site.

Look at the first part of the Web address (the domain name) between http:// and the first /, for example:

  • http://www.cafamily.org.uk/
  • http://omni.ac.uk/

This ‘domain name’ is the unique name which identifies that organisation on the Internet. The codes at the end represent the type of organisation and its country of origin.

Common organisational codes include:

  • .com (for commercial organisations);
  • .edu (for educational organisations);
  • .gov (for governments);
  • .org (for organisations, usually non-commercial).

Country codes, for example:

  • no code (for the USA);
  • .au (for Australia);
  • .int (for international);
  • .uk (for the UK).

Second level codes, for example:

  • .ac.uk (for educational organisations in the UK);
  • .co.uk (for commercial organisations in the UK);
  • .org.uk (for non-commercial organisation in the UK).

The name of the organisation producing the site should be clear and obvious on every page.

Full details about the organisation should be given. Look in sections such as “About us” and “Contact us”. They should include, where applicable:

  • contact details: (a) name of organisation; (b) postal address; (c) telephone number; (d) fax number; (e) e-mail address.
  • location: (a) map; (b) details of how to reach the organisation by car and public transport; (c) opening hours.
  • charitable status: (a) registered charity number.
  • list of staff.
  • list of other people involved, for example Management Committee, Medical Advisory Panel, Editorial Board.

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