Introduction
This article is designed to provide advice on the identification of reliable medical information on the Internet. Families of children with any disability or additional need and professionals working with them can also:
It is not difficult to find information on subjects such as medical conditions/disorders, treatments, drug and other therapies and research on the Internet. Indeed, people have been known to have bought drug and other treatments through the Internet without seeking a diagnosis from a doctor. In one well known case an Internet surfer suffered acute kidney failure after drinking oil of wormwood obtained online. Weisbord SD, Soule JB, and Kimmel PL, Poison on line: acute renal failure caused by oil of wormwood purchased through the internet. New England Journal of Medicine, 1997. 337: 825.
Judging quality
Anyone using the Internet to find medical information will need to evaluate what they find before deciding what information is useful and appropriate. The date information was written, the author together with details of their qualification to write on the subject, and the source of the material such as a university, hospital or government department are three of the important items to look for. There are important reasons to know these details - material can be out of date having been replaced by newer knowledge and treatments; unless the material is dated a decision on what information is useful and relevant to discuss with medical advisers cannot be made. If validating information is not given, the consumer will be unable to differentiate between types of information such as that provided by a medical expert, personal information written by an individual based on their own experience which might not be typical or 'insight' material from a number of people on a support group web site. With the provision of proper validation, all material has its own importance and relevance for different needs.
For example, Contact a Family medical texts carry endorsements in the following form:
Medical text written June 1996 by Professor P Beighton, Department of Human Genetics, University of Cape Town, Cape Town, South Africa. Last updated April 2004 by Professor H A Bird, Professor of Pharmacological Rheumatology, Leeds General Infirmary, Leeds, UK.
Contact a Family and the Information Management Research Institute (IMRI), School of Informatics, Northumbria University, Newcastle upon Tyne, UK, have produced advice to consumers looking for medical information on the Internet and for support groups who are planning or revamping web sites. The guidelines produced by our "Judge: Web sites for health" Project can be found at Web: http://www.judgehealth.org.uk and they are designed to address concerns that some of this information is inaccurate, misleading or even dangerous. Support group websites are important sources of health information. It is vital that these websites are well designed and contain good quality information, with indications of currency, authorship and provenance as well as balance.
Contact a Family also subscribes to the guidelines of Health on the Net. These guidelines for quality health sites can be found on the HON site Web: http://www.hon.ch which also gives a quality mark for sites following the guidelines. The Contact a Family site carries the Health on the Net quality mark.
Online support
In your search for information, you may come across 'my story' sites. These are Internet sites developed by individuals or families who have a specific disorder. Some of these sites are of a high standard with excellent links to verifiable hospital and university sites. However, even if they indicate that the medical information has been checked by a medical expert, this may be specific to that individual or family member and not be typical. These sites often give the name of a medical expert and you can then get in touch to check on the general nature of the disorder.
There are also a number of e-mail groups on the internet; many are available through http://uk.groups.yahoo.com or you can register with our confidential e-mail service http://www.makingcontact.org
You are likely to be in touch with people who are genuine, but remember, some may have extreme views and some may not be genuine. It should also be remembered that the way a medical condition affects an individual can vary enormously in severity. Each description offered by an affected individual will be personal and may not be reflected in the same way in others diagnosed with the same condition. Individuals may recommend treatments that may not suit every individual.
Genetic Information
Where a disorder is inheritable, the acknowledged first source of information is the Online Inheritance in Man (OMIM). This is the online version of the Atlas of Mendelian Inheritance in Man, edited by Professor Victor McCusick of Johns Hopkins Hospital, Baltimore. It is made available on the Internet; Web: http://www.ncbi.nlm.nih.gov/omim and contains helpful information about using the resource. A little time spent looking at the links shown in the left hand bar will be useful.
It should be remembered that this is a huge resource and contains information on many sub-types of syndromes and care should be taken to check that the entries found cover the correct forms of the disorders.
You will find a detailed history of the disorder including references mostly to abstracts but sometimes to full texts of articles.
The clinical synopsis will provide a list of features of the condition by body system. It is most important to remember that not all individuals will display all the features mentioned and the degree of severity will vary greatly. General information about medical disorders will, of necessity, cover the most severe scenario. Identification of the degree of severity of a disorder in an individual should be discussed with a medical adviser.
Online Resources
A search engine is designed to look for information on the internet. Well known search engines include:
Web: http://www.google.co.uk
Web: http://uk.yahoo.com
Web: http://www.freesearch.co.uk
A search engine will not rate the quality or accuracy of any information you find and you will still need to check the validity of any site that is found using a general search engine.
Below you can find a list of resources where you can search for information that conforms to quality criteria although you will still need to check dates of publication to ensure the information is relevant and not outdated. It is important to present information in a style that is easily accessible to people with visual and other difficulties but it is especially important with medical information that the website providers adhere to the basic validations of accuracy, currency and relevancy. Some of this information is provided on the page and some can be found in a separate page describing the purpose and authorship of the information on the web site. However, dating of information should be found on the page even if the authorship is found elsewhere.
Contact a Family
Web: http://www.cafamily.org.uk
Look out for new features in our online version of the Directory, from summer 2008. This will include direct links to other reliable sources of information on conditions.
PubMed
Web: http://www.ncbi.nlm.nih.gov/pubmed is a service of the National Library of Medicine provided on the Internet by the US Government. This searchable database is a first port of call to identify published research in the world's learned journals. As articles cover human and animal subjects, foreign language articles and 40 years of information, you will often wish to refine your search narrowly. Under the main search window, select Limits and fill in the range of information you need using the check boxes; also make use of the very informative Help/FAQ option in the side bar.
Inute
Web: http://intute.ac.uk
For access to fully evaluated health sites.
Medline Plus
Web: http://www.nlm.nih.gov/medlineplus/encyclopedia.html Extensive medical encyclopaedia made available by US National Library of Medicine.
National Institute of Neurological Disorders and Stroke
Web: http://ninds.nih.gov/disorders
Excellent information on a range of neurological disorders provided by the US National Institutes of Health with further links to research.
National Institutes of Health
Web: http://www.nih.gov/icd
Gives links to all the US National Institutes of Health; many of them have very extensive searchable databases.
National Organization for Rare Disorders
Web: http://www.rarediseases.org/search/rdbsearch.html
The site of NORD - National Organization for Rare Disorders which gives access to abstracts of its information on a huge range of disorders as well as the networks that support the disorder. This is an American site but is very useful where there is no equivalent UK support network.
Department of Health
Web: http://www.dh.gov.uk
Gives access to the index of all governmental organisations such as the Department of Health; information and full texts of DoH publications, Health of the Nation targets, helplines etc.
National library for health
Web: http://www.library.nhs.uk
UK National Library for Health has a wide range of information and is able to search across multiple health resources including The Cochrane Library, BMJPG Clinical Evidence, NHS Direct and specialist libraries including Cancer, Child Health and Respiratory diseases.
Cochrane Cystic Fibrosis & Genetic Disorders Review Group
Web: http://www.liv.ac.uk/cfgd
The Cochrane Collaboration Cystic Fibrosis & Genetic Disorders Group.
NHS Direct
Web: http://www.nhsdirect.nhs.uk
The online arm of the UK National Health Service.
British Paediatric Surveillance Unit
Web: http://bpsu.inopsu.com
The British Paediatric Surveillance Unit site detailing its work in surveillance of rare disorders in children and giving links to published information.
Medscape Medical Search
Web: http://www.emedicine.com/search.html
Very good site for information on a wide range of disorders. Fully authored and dated on page with references and e-mail links to writers and editors.
Great Ormond Street Hospital for Children and UCL Institute of Child Health
Web: http://www.ich.ucl.ac.uk
Link to the UK's foremost children's hospital. Contains extensive archive of paediatric resources and the latest in care and research developments.
UK Genetic Testing Network
Web: http://www.ukgtn.nhs.uk
List of available NHS genetic testing services accessed via GPs.
Orphanet
Web: http://www.orpha.net
A database providing information on rare disease orphan drugs.
Your Child's Health
Web: http://www.yourchildshealth.nhs.uk
An introduction to child health topics.
NHS Choices
Web: http://www.nhs.uk
NHS Choices, a site providing information on conditions, treatments, local services and healthy living.
Information last updated July 2008.
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