Sunday, September 26, 2010

Dealing with Health Information on the Internet

So you (or a friend of family member) come back from the doctor and have a new previously unknown condition to deal with  and you head to Google to lean more.

Health information on the Internet can be overwhelming and if your not careful very misleading. Initial searches bring up shallow commercial, wellness or media driven sites.  Wikipedia is good for definitions and some times has some good references, but don't stop there. The good information is far harder to find. Look for support organisations, government and not for profits, where the information is generally far more balanced and detailed. These sites often have links and you need to keep following the trail.

Get copies of all medical communication and goggle and gain information on the technical terms and prognosis. There is a massive amount of technical medical information and databases such as this PUBMED; At times you wish that you concentrated more when studying science at school, but generally you get the gist. I recently found a best practice guide to treating sarcomas, an incredible and useful document to have.  Medical professionals, if you are ask, are good at explaining the gobbledygook, but time is often limited and you are better to go in to consultation with a least a reasonable understanding of the subject matter.

To get a patient perceptive I have found blogs to be wonderful, but again be careful. People who have a minor condition or potential major condition but get through it quickly don't generally blog about it.  So blogs don't give good balance and are over represented by patients with a poorer than average prognosis. Blogs also have links to useful and interesting sites, such as mine here.

Patient support forums are a great interactive way to get and share information with others with your condition. You learn a lot on coping and wellness from other patients and you learn from their eyes and experience, not the doctors. Also check out YouTube, iTunes University and podcasts, they often have easy to access and digest information. .

As previously blogged the medical industry is a bit dysfunctional, they are great at drugging and cutting but not necessarily good at wellness.  You are referred from specialist to specialist and it is critical that you are informed and take charge of your treatment. If you decide to do your own health research on the Internet I suggest that you do it thoroughly or not at all. Don't charge out too early i.e. "I have a lump what could it be?"  wait to you have a medical diagnosis. Also focus your research on what is know and the current facts of your situation and not on what might happen.

The advent of Health Information to the internet is fantastic. You are able to become fully informed and take a far greater role in your treatment.  It will drive greater accountability and learning into the medical sector and is transforming how we interact with health professionals. Power to the Patient!


  1. Thanks Gary - valuable stuff - insightful evaluations. I find it is hard when facing unknowns (especially while awaiting a medical diagnosis) not to respond emotionally or over identify to some things that I will balance those mind maggots out with your suggestion of where to apply focus.

  2. Lynn, We all look at the scary stuff and it freaks you out now and again. I think this is natural but important to keep healthy balance. Some good advise I was given was to live in the NOW with the facts of your situation today and don't try and second guess the future (or what a medical prognosis may bring). Focusing on the current also gets you thinking about the positive and fun things you can do today.
    I think it is good to be informed of the future prognosis paths and risks but not to live in this world. Here is a good blog entry of a cancer survivor with a very poor prognosis on how he dealt with information and probabilities, http://cancer Keep smiling!

  3. Good article on how to keep positive mental attitude.

  4. Failing that some life advise from Monty Python:

  5. For extreme adversity I prefer this sketch

  6. Simon, love you dark sense of humor and also this skit. Esp. like the clippy cloppy hourse.


Thanks for your comments Gaz