Introduction
This article is designed to provide advice on the identification of reliable medical information on the internet. Families of disabled children and professionals working with them can also:
Judging quality
Anyone using the internet to find medical information will need to evaluate what they find before deciding if the information is appropriate for their needs. It is important to think about who the information is being provided by and their motivation. Independent organisations such as government bodies and charities are unlikely to provide biased information but companies may want you to buy their products or services. Reputable organisations will provide their name and address details as well as a method of getting in touch with them. They should also have an ‘About us’ section or similar where they detail the aims or purpose of the organisation and the way in which their information is verified.
The date information was written, the name of the author together with details of their qualification to write on the subject should be clearly listed. This is important as material can be out of date having been replaced by newer knowledge.
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 2010 by Professor H A Bird, Professor of Pharmacological Rheumatology, Leeds General Infirmary, Leeds, UK.
Contact a Family subscribes to the guidelines of Health on the Net (HON). These guidelines for quality health sites can be found on the HON site http://www.hon.ch The Contact a Family site carries the HON quality mark. This means that we follow standards so it is easy for people using our information to assess its quality.
Online support
A search engine is designed to look for information on the internet. Well known search engines include Google and Yahoo.
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criteria, although you will still need to check dates of publication to ensure the information is relevant and not outdated.
Contact a Family
http://www.cafamily.org.uk
The Contact a Family Directory has entries on more than 430 medical conditions and rare disorders. All entries are approved by a medical expert.
Medline Plus
http://www.nlm.nih.gov/medlineplus/encyclopedia.html
Medline Plus hosts the ADAM medical encyclopaedia with more than 4,000 articles about diseases, tests, symptoms, injuries and surgeries. Content is verified by medical professionals.
National Organization for Rare Disorders (NORD)
http://www.rarediseases.org/search/rdbsearch.html
NORD gives access to reliable 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.
Great Ormond Street Hospital for Children
http://www.gosh.nhs.uk/gosh_families/information_sheets/index.html
GOSH has more than 300 information sheets covering a wide range of conditions, treatments and medications. All have been written by health professionals and are regularly updated.
Children First for Health
http://www.childrenfirst.nhs.uk
A general health information site for young people and families, which is run by Great Ormond Street Hospital. It has approved condition-specific information in a useful A-Z format.
Orphanet
http://www.orpha.net
Provides a searchable database of rare disorders, information on orphan drugs, clinical trials, diagnostic tests and patient organisations.
NHS Choices
http://www.nhs.uk
NHS Choices is a site providing information on conditions, treatments, local medical services and healthy living.
Patient UK
http://www.patient.co.uk
Doctor-verified information on health, lifestyle, disease and related topics as well information on drug treatments.
Other information and support
In your search for information, you may come across ‘my story’ sites. These are internet sites developed by individuals with a condition or families who have a child with a medical condition. Some of these sites are of a high standard with excellent links to verifiable hospital and university sites for further information. However, even if they indicate that the medical information has been checked by a medical expert, it may be specific to that individual or family member and not be typical.
It is important to remember the same condition can affect individuals in very different ways. Information may reflect the most severe cases and not always apply to every person with a certain condition.
It is very important that any information that is found as part of an internet search is discussed with a medical professional.
Mutual support
You may find a number of online groups or support forums where parents in the same situation can get in touch with one another. In the most part, those using these sites will be genuine, but remember, some may have extreme views and some may not be genuine. You should exercise caution when using forums and avoid giving out personal contact details on the internet.
Contact a Family runs a linking site called MakingContact.org, which is available at www.makingcontact.org Users can get in touch with one another without having to give out personal contact details.
Information last updated November 2010.
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