Sunday, August 30, 2009

Double Checking Info - How I research

Too Much Information - TMI!

I once worked in a cubicle farm full of ladies, and a lonely male intern. When we ladies got to talking amongst ourselves about female health issues, forgetting there was a 20 year old boy sitting in our midst, he would interject with "How about those Cardinals?" (the local major league baseball franchise) in order to remind us - too much information!

Searching on the web is the same - there is an enormous amount of information presented there, much of it anecdotal, and some of it unreliable. How do you determine what is reliable, and what is not? It's a difficult path to tread, and there is a lot of information to weed out.

There are two ways I search for information - as my physician might from a technical viewpoint, and as a patient would from a personal viewpoint. Giving you a few of my favorite websites and ways to find information I find useful and pertinent.

Looking at information from a technical viewpoint:

When I look at information I think - what information would my physician be looking at? While there are excellent sources that are not "peer reviewed" if I am trying to figure out if a treatment is justified, or if a diagnosis might be warranted, I try to use resources that physicians would use. I think these avenues contain consistently reliable scientific information.

Abstracts that are visible for free on PubMed are easy to search, and I have even emailed some of the researchers for more information and gotten responses. These are peer reviewed (many other specialists/doctors have reviewed them) and so have a degree of credibility that news articles do not. This is how I got more information concerning occipital stimulators and the absence of any medications other than indomethacin that are really able to treat hemicrania continua. Some of them even link to free articles so you can read the entire article (which is better than the abstract any day). You often can buy an article online, but the prices range from $20 on up to $100, depending on the article and the journal/publisher. If you have access to a medical library or college library many of these articles are available without paying the subscription/article price.

I also subscribe to a service at MDLinx that emails me daily links to new medical articles in the desired area of specialty. I even subscribe to the administrative news feeds from this service as I deal in the hospital administrative part of the industry for my job. I have used this service for years, and the information it links you to is up to date. Sometimes you can read the entire article and sometimes, just like on PubMed, only the abstract is available.

The American Association of Family Physicians website is an excellent source for information. Articles always have links to references you can research also.

Official US Government websites for specific problems are great resources for accepted practices and treatments, also statistical information concerning these treatments. The National Cancer Institute website is a great resource for persons with cancer. A big plus on this site is that they have two versions of much of the information - one for patients that is easier to read, and one for professionals. The National Digestive Disease Information Clearinghouse (NDDIC) is a great place for persons with digestive disorders like Celiac desease or diabetes to get information. The National Institute of Neurological Disorders and Stroke (NINDS) has a lot of information and links concerning neurological problems and strokes - headaches included.

Commercial sites I might look at include the pharmaceutical sites for specific drugs, or RxList which has both patient and detailed pharmaceutical information for drug side effects and action. EMedicine from Medscape has excellent physician articles and patient related information, as does Merck at Merck Medicus which requires registration and parts are closed to non-professionals, and the Merck Manuals online which does not require registration.

Other sources can be associations that deal with specific ailments or problems often have physician authored articles available on specific problems and great information. The National Organization for Rare Disorders (NORD) is a great site for information if you have a rare condition. The ICUS website (International Chronic Urticaria Society) and TMS website (The Mastocytosis Society) are examples of two I use for problems with mast cells and hives. Headache sufferers have associations that are organized by disorder - such as cluster headache (Organization for Understanding Cluster Headache or OUCH) or migraine (The National Migraine Association or MAGNUM) or in general such as the American Headache Society (AHS), or the National Headache Foundation (NHF). There are a lot more associations out there than I have room to show, but these should give you an idea of the diversity and depth of information that is available.

I also look at some journals online. I get a news feed from the New England Journal of Medicine and regularly view abstracts and search the Journal of the Americal Medical Association and Cepahlgia, a journal of the International Headache Society a medical professional only organization.

Looking at information from a personal viewpoint:

The organizations for specific disorders often have patient blogs or forums for networking. These can be a great source of information. Some are organized just for interpersonal support purposes, an example being which is a worldwide support group for cluster headache sufferers. These types of sites have information that is "concentrated" and often searchable. The information given is often the result of trial and error on hundreds of patients' experience, and can give you great information on certain types of treatment or procedures for your condition.

Internet groups for specific illnesses (I belong to one for endometrial cancer, and for hemicrania continua) are great resources for support and for information. Participants have a variety of specialists and treatment modalities they use and to my experience have always been generous about adding to your knowledge and giving you feedback. Groups that meet locally are another great resource, but when you live in a rural area like I do they are few and far between.

Blogs are another great resource. I like these because they are chronological - you can see how someone is doing at a point in time, and how they have progressed (or not). Almost all blog writers welcome questions and comments, and offer very unique insight into living day to day with specific problems. Much like the support groups, I think bloggers are great about reaching out to readers and helping to educate the public about health issues. Those bloggers that take the time to create blog carnivals - which are like a journal of different blogs concentrating on a single subject - make it even easier to read about issues in detail. I am not including any specific links to other blogs in this article, because part of the fun of reading blogs to me is the process of finding new ones to read! I keep specific links to interesting blogs on my site, and other bloggers do also.

I also utilize some "networking" sites or forums that are just for health issues - Wellsphere is one, and MedHelp is another. These generally require registration, but the content is for the most part free (MedHelp does charge a minimal fee for some questions answered by physicians). I have gotten great responses to questions in these forums (some from participants in other countries) that have been most helpful! There are more than these two out there, but these are the two I use. Other great networking sites are Twitter, Facebook and other social sites which have groups for persons with certain illnesses.

Hope this helped someone...

I hope this has been of help. If you have already tried most of the options I've shown above you might be able to give me a pointer or two!

The verbage of the professional sites can be daunting at first, but use a good online dictionary to "interpret" the information, and use the sites that have patient vs. professional information and it will help the non-medical person understand what is written.

Always seek the advice of a medical professional before making major changes based on ANYONE's opinion. Even herbal supplements have side effects, toxicity levels, and interactions: what works for one person might cause you problems. Believe in yourself, be positive, and know when you find all sorts of conflicting information this is the same situation for your physicians. Gives you some perspective on why it is so difficult sometimes to get a diagnosis and a treatment that works! Don't be afraid to reach out to various resources with questions. If they don't want to answer, all you have wasted is an email, comment or phone call and a small amount of time.

So I'll bet by now you are thinking "How about those Cardinals??" :)


  1. hi, i got ur comment on my blog thanks - i replied to it on my blog not sure if you saw it? will spend some time reading your blog in detail, good to see i am not the only one with a permanent headache.

  2. Permanent Headache:
    These headaches are very disabling and very isolating, and a lot of physicians don't know about them. Hoping you get help on your journey down the river of pain.
    I've been checking your blog out. At least I don't have international travel to add to my list of possible causes!! Beautifully written and great illustrations! Thanks for allowing me to link to it.

  3. Excellent post, packed with great info. Thank you!

  4. Jasmine - Thank you - I think I over research sometimes! Too many failed remedies under my belt I think.

    I forgot the most important website of all: