Finding quality MS information on the internet

1
Finding quality MS informationon the internet

• A presentation developed by www.msactivesource.co.
  uk
• MS Life, April 2006

2
Introduction

• MSActivesource.co.uk Community Manager
• Sponsored by Biogen Idec
• Researched 50 sites
• 80 MS Specialist Nurses
• 750 people with MS
• Researching system I use

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Presentation overview

• The internet and world wide web
• Directories
• Search engines
• Evaluating sites
• Bad sites
• Good sites
• Conclusions

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The Internet history
AOL
WWW
ARPANET
Academia
5
The Internet

• Over 1 billion people use the internet
  worldwide(Ref3)
• The internet has grown 182 between 2000 2005
  (Ref3)
• The internet has grown 145 in the UK between
  2000 2005 (Ref3)
• 64 of adults in the UK (29 million) had accessed
  the internet in October 2005 (Ref4)
• 92 had used a search engine to find information
  on the internet (Ref4)

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What are directories

• A web-based directory is similar to an offline
  directory, like the Yellow Pages (ref5)
• Sites on a directory are reviewed and added by a
  person, not a computer. The site summary is
  written by an editor
• You can search through a directory like a search
  engine or just browse it by subject

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Directories examples

• The main two directories of the internet are
• Yahoo
• This has 129 MS specific sites
• Open Directory (DMOZ)
• This has 625 MS specific sites
• Here are a selection of UK health specific
  directories we use
• Patient.co.uk
• NHS Direct.org.uk
• OMNI.ac.uk
• Medicines partnership.org

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Search engines

• A website that is a database which allows you to
  search through an enormous list of web pages on a
  particular subject (ref5)
• It is built by computer robot programs
  (spiders) and ranked by a computer (ref6)
• A search engine finds pages by matching words in
  the pages of sites it has on its database to your
  search (ref6)
• Over 600 million searches are undertaken each
  month in the United Kingdom (Ref10)
• 80 of us first discover a site using search
  engines (Ref10)
• Your results will contain the good, bad and the
  ugly (ref6)

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Search engines

• 100 million people use Google every day (Ref10)
• MSN
• AOL
• Yahoo/Overture
• Ask Jeeves
• Even the biggest search engines do not come close
  to searching the entire current web

Hint
To find UK results use UK versions of search
engines (.co.uk) or put UK on the end of your
search, eg online petstore UK
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Searching tips

• Pick your 2 favourite search engines
• use their help screens and FAQs
• Then you can compare results between them
• Use the advanced searching facilities if
  available (all Ref7)

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Searching tips

• Tighten you search
• Write in specific terms rather than a full
  question eg hairdresser twickenham
• Put quotation marks around your search phrase
• Combine words with eg hairdressertwickenham
• Refine your search using google criteria such as
• fatigue sitewww.mssociety.org.uk(only search
  for links on a specific site)
• linkswww.msactivesource.co.uk(find sites which
  link to this one)

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Health Search engines

• Users of the internet explore only the first five
  links on general search engines when seeking
  health info(ref9)
• Health specific search engines
• encourage accredited health sites through better
  rankings
• Kosmix.co.uk, healthline.com, webmd.com
• Finding relevant information ascertaining its
  trustworthiness are linked (ref11)

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Evaluating a site why?

• There are now over 4 billion pages on the web
  which contain the word health.
• Searching for information has become more
  difficult and the quality...disappointing
  (Ref11)
• A recent HON Federation survey found that 81 of
  patient respondents said that trustworthiness of
  a site is their most important feature (Ref12)
• Evaluating a site will allow you to tell whether
  the site is trustworthy, relevant useful

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How to evaluate a public site

• Easy to use can you find your way around?
• Verified does a public body recognise
  it? (BBC, NHS, HONCode)
• Authoritative Who is giving the
  information (Healthcare, professionals / Lay
  People)?
• Legal Does it comply with local
  guidelines i.e. in the UK with ABPI.org.uk?
• Up to date is the content recent and regularly
  reviewed?
• Authentic Are any claims referenced back to
  the original research?
• Transparent Is any source of funding declared
  on the website?
• English Is the site written in Plain English?

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EVALUATE Easy to use

• Is the site easy to use?
• Are there navigation menus?
• Can you find your way around?
• Does it look well crafted?
• Is the design consistent across the site?
• Does every page on the site look the same?
• Is it accessible?
• Does it load quickly?

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EVALUATE Verified

• Is the site recognised by another organisation
  such as the BBC, NHS Direct or Health On the Net
  (HONCode)?
• Can the information be verified by other sources?
• Is this site linked to by other sites?
• Look for a links section or search on medical
  search engines
• Or, can you find the site on quackwatch.org or
  another site which specialises in debunking
  unsubstantiated claims

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EVALUATE Authoritative

• Who provides the information?
• Health Care Professionals?
• Lay people?
• Do they list their qualifications?
• Look for about us and author details on each
  page
• What is the purpose of the information?
• Is it trying to sell you something?
• Assess the reason for the information being
  provided

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EVALUATE Legal

• What information does the site collect?
• Is it being sold on?
• Look for their privacy policy for further details
• Does the site comply with local guidelines ie
  ABPI.org.uk for the UK?
• Look for a Disclaimer and other policies
• Is the site Holistic?
• Does it state that you should discuss any
  treatment information found on the site with your
  existing Care Team?

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EVALUATE Up to date

• How old is the information?
• Is it up to date and current?
• Look for a date when the page was written or
  reviewed
• Are the links current?
• Check to see if there are any broken links

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EVALUATE Authentic

• Does the site provide evidence for any Medical
  Claims made?
• Is the information provided factual?
• ANY medical claim must be linked to the source of
  the claim so you can verify it for yourself, this
  is the heart of Evidence based Medicine
• Look for footnotes at the bottom of the page or a
  reference page
• Does the web address match the site?
• Is it an organisation (.org) providing
  information, a university (.ac) or a company
  (.co.uk or .com)?

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EVALUATE Transparent

• Is the source of funding declared on the website?
  
• Who provides the information?
• Do they have a hidden agenda?
• Are there details on the authors?
• Look for an About us section
• Does the site have an editorial board?
• Look for details on their editorial policy, how
  is information approved for the site?
• Are there adverts on the site?
• Look for details on advertising or sponsorship of
  the site
• How does it manage your interactions?
• Are they prepared to answer questions?
• Look for contact details to email them your
  queries

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EVALUATE English

• Is the site easy to read and written in Plain
  English?
• Or does it try to baffle you with medical terms
  and a superior, we know more than you attitude?
• How is the information written?
• Do they provide different sides of an issue?
• How much information is given?

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Examples of bad sites

• Those that misinform, mislead or mis-sell

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Examples of good sites

• Those that inform, innovate and support

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Fully referenced site
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Written in plain English with medical terms
linked through to a full glossary
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Conclusions

• Use a variety of directories, search engines and
  information sites (BBC) for your research
• Visit multiple sites when investigating a
  particular topic
• Remember that your visits to directories and
  search engines will yield a wide range of quality
  from a variety of sources. Therefore it is key to
  EVALUATE the sites you encounter (ref18)

37
References

• The Living Internet History (http//www.livingin
  ternet.com/)
• The difference between the Internet and the World
  Wide Web, Webopedia (http//www.webopedia.com/DidY
  ouKnow/Internet/2002/Web_vs_Internet.asp)
• Internet world statistics (14/2/06)
  (http//www.internetworldstats.com/stats.htm)
• Individuals accessing the internet in the UK,
  National statistics ominbus (http//www.statistics
  .gov.uk/CCI/nugget.asp?ID8Pos1ColRank1Rank1
  76)
• What is a search engine, Ask Bruce
  (http//www.bbc.co.uk/webwise/askbruce/articles/se
  arch/searchengine_1.shtml)
• Finding information on the internet A tutorial,
  University of California, Berkeley
  (http//www.lib.berkeley.edu/TeachingLib/Guides/In
  ternet/)
• Web searching tips and techniques, Dartmouth
  Biomedical Libraries (http//www.dartmouth.edu/bi
  omed/workshops/search.htmld/features.shtml)
• How do I search for UK only sites?, Ask Bruce
  (http//www.bbc.co.uk/webwise/askbruce/articles/se
  arch/ukonlysites_1.shtml)
• How do consumers search for and appraise health
  information on the www?, British Medical
  Journal(http//bmj.bmjjournals.com/cgi/content/ful
  l/324/7337/557?maxtoshowHITS10hits10RESULTFO
  RMATandorexactfulltextandsearchid1FIRSTINDEX
  0sortspecrelevancevolume324firstpage557res
  ourcetypeHWCIT)
• Shady tactics in the battle for internet hits,
  The Times 8th February 2006
• HONcode newsletter March 2006 (http//www.hon.ch)
• 9th HON Survey of Health Medical Internet
  Users, Winter 2004-2005 (http//www.hon.ch/Survey/
  Survey2005/res.html)
• Evaluating Internet Information, University
  Libraries, Virginia Tech, USA. (http//www.lib.vt.
  edu/help/instruct/evaluate/evaluating.html)
• Health and medicines information guide and
  directory, Ask about Medicines
• 10 things to know about evaluating medical
  resources on the web, National Centre of
  Complimentary and Althernative Medicine, USA
  (http//www.nccam.nih.gov/health/webresources/)
• Evaluating information, some questions to help
  you judge online information, Jacob Hespeler
  Library (http//jhss.wrdsb.on.ca/library/html/eval
  uate/evalinfo.htm)
• Evaluating Health web sites, National Network of
  Libraries of Medicine, USA (http//nnlm.gov/scr/co
  nhlth/evalsite.htm)
• Searching the Internet Recommended sites and
  search techniques, University of Albany Libraries
  (http//library.albany.edu/internet/search.html)