Where To Get Information About Cystic Fibrosis

Where To Get Information About Cystic Fibrosis

Knowledge Is Power.notebook

The best source of information will be your CF team, so be sure to ask them your questions and to clarify anything about Cystic Fibrosis that is confusing you.

Don’t rely on memory, it can fail you in times of stress. Write down questions in a notebook as they pop into your head, then pull it out each time you see the CF team. Use it to also record what they tell you, to help you remember various regimens and instructions.


Healthy Web Surfing

There are a number of ways to evaluate the quality of health information available on websites:

Be a cyberskeptic – Misinformation is everywhere on the Web. Anyone can put up a webpage and make claims that are not correct and at worst damaging to your physical and emotional health.

Beware of claims that one remedy will cure a variety of illnesses, promising quick, dramatic results or that it relies on a secret ingredient.
Use caution if you see a sensational writing style, lots of exclamation marks and jargon
A health website for patients and families should use simple language, not a lot of technical words

Consider the source – Look for recognized authorities and know who is responsible for the content.
Look for an ‘about us’ page, who runs the site? Is a government, non-profit, professional health system, commercial or personal site?
Websites should show a way to contact the group or webmaster, be skeptical if you cannot find who runs the site.

Focus on the quality of the information – Who has reviewed the information before it has been put on the webpage
Has the information been reviewed by an editorial board, or a board of experts with appropriate skills.

Look for the evidence – Rely on medical research, not opinion or anonymous testimonials
Who wrote the information? Is the name of the individual or organisation listed? J Smith, Registered Nurse, XXX Hospital.
If case histories or testimonials are published, look for contact information, email or telephone, if they are hard to find or non-specific – use caution.

Check the date – Look for the latest information. Is the site current?
Documents on the ‘latest’ way to treat medical conditions should be current.Click on a few links on the site, broken links may suggest that the site is not maintained.

web_surfBeware of bias – What is the purpose of the website? Who is funding the site?
Check to see if the site is supported by public funds, donations or by commercial advertising.
Look to see where the information is coming from: a company that makes a medicine provides information for treatment using only their medication, you should consult other sites to see what they say about the same medication.
The Medsafe website gives the most objective view:

Protect your privacy – Health information should always be kept confidential
There should be a privacy policy shown. Read this before you share any information. Are you really being protected?