Patient safety is important, and the safety of internet health data has been an ongoing concern for ages. We now have a great addition to the literature: “Trying to Measure the Quality of Health Information on the Internet: Is It Time to Move On?”
It’s an editorial in the new issue of the Journal of Rheumatology. Citing a JAMA article all the way back in 2002, Amol Deshpande, MD, MBA and Alejandro Jadad, MD, DPhil, FRCPC, FCAHS, say:
a systematic review attempting to evaluate the number and characteristics of reported cases of harm in the peer-review literature determined that for a variety of reasons, there was little evidence to support this notion. Nonetheless, considerable resources continue to be spent on developing and disseminating quality assessment tools to evaluate online health information.
The editorial describes an article in the current issue that attempts to grade the quality of patient information (about a treatment for arthritis). It’s a tough challenge; they conclude that the test “similar to its predecessors, suffers from several limitations, [including] uncertain levels of usability, reliability, and validity.” Ouch.
So, if traditional criteria for evaluating traditional media are failing for modern media, is all hope lost? No; the answer, these editorial writers conclude, lies with how patients themselves have learned to evaluate online data:
Researchers, for their part, continue to view the role of health professionals as “providers and protectors,” able to control, or in some way “regulate” the types and amount of information that patients, their loved ones, or the public should or could access. This contrasts sharply with what is happening today in the real world. Groups, mainly led by patients, are now beginning to take matters into their own hands to address problems that the health system has continued to ignore. Instead of conforming to the traditional asymmetrical offline patient-physician relationship, the public is embracing the tenets of Web 2.0, opening new horizons for a level playing field and improved health services.
“The time has likely come to end our Byzantine discussions about whether and how to measure the quality of online health information. The public has moved on. It is time to join them in what promises to be an exciting voyage of human fellowship, with new discoveries and exciting ways to achieve optimal levels of health.
If we had a Ferguson Award for participatory thinking, this editorial would get one. How modern; how in touch with reality.
Thanks to @CarlosRizo, a colleague of the authors, for the tip tonight on Twitter.
Excellent analysis of the quality of health related information online. We must be thinking along the same lines – in cyberspace… I wrote about my experience and perspective on the use of online health information for both patients and providers just yesterday.
This is only one idea in a series of posts about The Value of the Internet for Health Information. This one is Part 3: The Internet and Access to Quality Healthcare Information at http://www.myhealthtechblog.com/2009/08/part_3_internet_usability_and_access_of_healthcare_information.html
If you have the inclination, take a look, I would be interested in your thoughts.
On September 17 I’m giving a keynote address in Toronto at the Medicine 2.0 conference, run by Gunther Eysenbach. Gunther was one of the advisors to Tom Ferguson on the e-Patient White Paper. His research in Europe, trying to find “death by googling,” was reported in Chapter 2 of the white paper. It’s worth a quick click.
I was not impressed by the editorial. It was a stupid idea to do formal studies of Internet health information in the first place. All of that research boiled down to: Does the information on a web page agree with my current opinions that I promote as fact?
Big deal. Who cares?
People hear about medical and health subjects in supermarket lines, newspapers, from doctors repeating textbook nonsense, and perceptive doctors independently evaluating the literature and their patients (rare, rare, rare). Smarter people have always been pretty good at figuring out what to believe.
The Internet is just a medium for passing around the same information that has been around for years. Nothing about it makes its information more or less reliable.
The biggest difference the Internet makes? Doctors cannot as easily intimidate patients into thinking they are in a rare situation. Go on the Internet and you might find scores, hundreds, thousand, or millions experiencing the same thing. (Hmmm… maybe this initiated doctors dislike and distrust of the web?)
Learned academians should have figured the Internet in 1994 instead of 2009 and spent the last 15 years evaluating and contradicting garbage research that gets printed in medical journals.