You are here because you want to understand your pain. Chances are that your doctor has given you very little information, and most of it has come in the form of pamphlets that were attached to pill bottles. a recent survey indicated that some 60% of us place more trust in the info we find online than we do in our doctors, but is that trust well placed?
A 2009 study showed that about 58% of Americans seek out health info on the internet. Another study found that 39% of those with chronic pain sought out information relating to their illness online. Unfortunately, we often don’t know if the info we are finding is accurate and reliable. And, that’s just what researchers at the University of New Brunswick wanted to know.
According to the researchers:
Websites providing health-related information that are of high quality would include both breadth (e.g., touches on numerous aspects of the illness and introduces various treatments) and depth (i.e., detailed discussion of treatment including risks and benefits) of information, participation of relevant health professionals and researchers, affiliation with relevant societies or organizations, and inclusion of citations supportive of arguments.”
Previous studies have reviewed a variety of health websites for information specific to various illnesses and found:
much of the information was confusing, not supported by research or accompanied by relevant resources or literature, was of little value, or was designed for commercial gain”
Sound familiar? It certainly does to me. Moreover,
the experience of living with CP [chronic pain] (especially if the CP condition lacks a definitive medical explanation about cause and if management …) coupled with the desire for relief from suffering may also lead consumers to be less critical of Websites providing information that leads to hope (e.g., miracle cures).”
Rather than use subjective ratings that weren’t clear or that were defined by the users, the researchers chose to use the DISCERN website rating tool to establish the reliability of the websites that chronic pain patients are using to obtain information on their illnesses. DISCERN is publicly available and easy to use for anyone, allowing for a higher level of reliability between those doing the rating.
This evaluation was carried out by entering the following phrases in the three most common search engines (Google, Yahoo, MSN):
- pain
- chronic pain
- back pain
- arthritis
- fibromyalgia
- headache
- migraine
- pelvic pain
Only the top 50 results for each term on each search engine were included in this evaluation. They did not include portal sites, link sites, or websites that were primarily sales sites with no information about chronic pain.
During the initial evaluation, 408 distinct websites were evaluated. The average rating of these sites was a 2.81 (on a scale of 1-5), with only 13% of these websites being rated as “high quality with minimal shortcomings”. Quality varied greatly depending on the keyword used for the search. The highest rated keywords “fibromyalgia” and “arthritis” yielded much higher rated websites than the lowest rating keyword “chronic pain.”
The primary researcher and a research assistant (with no formal training in using the DISCERN or in rating websites) rated each website using the DISCERN to establish inter-rater reliability.
21 chronic pain patients each evaluated 15 chronic pain websites selected from the highest scoring and mediocre scoring websites (as scored by the researcher). Participants were given some information about how the DISCERN works as well as the link to the website to learn more; however, they were not given any formal training.
Each of the websites was reviewed by seven different consumers, and the overall quality of the websites was rated similarly between the consumers and the professionals. However, ratings for other items varied considerably. There was no inter-rater reliability for “implications of not seeking treatment”, yet almost full inter-rater reliability for “discussion of multiple treatment options.”
Overall, the researchers found that most of the websites they reviewed contained poor quality health information. Consumers were able to use the DISCERN to accurately distinguish between poor and high quality health-related websites. The consumer evaluations of the websites generally matched up with the professional evaluations.
The researchers also found that results that show up on the first page typically rate higher on the DISCERN than pages that rate on the second page or further. This is good since many of us don’t go past the first page.
If you want to establish whether or not the websites are you are viewing are reliable and trustworthy, you can use the DISCERN, or you can limit your searches.
Stephen Rodrigues, MD says
NO, Hell NO!!
This is an interest finding and is 100% true. I consider this a travesty of justice and a way to cover ups of a few lies. 32 years in medicine, I have concluded medical science educational elite dropped the ball to allow a rigged system to be setup under our noses. The Rig vs The Facts:
The science charade:
Pain is located in your skeleton or nerve parts ie joints or spine.
Pain can be seen on the MRI.
Pain comes from Osteoarthritis, Degenerative Disease, bone-on-bone, slipped disc, wear and tear of cartilage.
Pain problems can be fixed by removing the ugly parts and wedging in shiny new titanium parts.
There are no other standard of care options we recommend, except to take your painkillers, suffer or go to surgery.
We have studied these problems extensively and the longer you wait to get the surgery the worse your pain and life will get.
The correct science:
The most common primary location of all aches and pains can only be located in the soft, connective and muscular tissues of the body.
The exact pathology of your pain is within muscle bundles.
The only way to eradicate the pain from muscle tissues is with hands-on physical therapy.
Hands-on PT comes in a spectrum based on Rachlin, Gunn, Simons and Travell: Massage, Chiropractic care, filament and hypodermic intramuscular needling.
It is impossible, by the laws of biology, for the skeletal, CNS or blood to be the primary pathological location of pains.
It is a criminal act, although now “legalized” to suggest a “standard” treatment that defies science facts. It is a betrayal and a sinister action against another human being to offer a treatment which goes against these science facts which will guarantee to leave them permanently handicapped and disabled.
HELP yourselves with knowledge.