“Medical websites created by medically unqualified individuals (i.e. persons who are not physicians) are unreliable and should, de facto, be considered medically unsound. Don’t you agree?”
That’s a question that the late great Dr. Tom Ferguson said he was often asked during his public talks and workshops. The pioneering physician, author and researcher studied and wrote about the empowered medical consumer starting in the 1970s – a time when most people had never even heard of such an animal.
So as one of those “medically unqualified individuals” who in 2009 launched this site about women’s heart disease, I was particularly interested in Dr. Tom’s answer to that question. Here’s what he wrote:*
“I try to explain that it’s not that simple.
“While you may be considerably less likely to find inaccurate, misleading, or self-serving information on most professional sites, this is by no means an ironclad quality guarantee. And when it comes to addressing the principal concerns of the patient in a helpful and useful way, professional sites often compare unfavorably to patient-produced sites.
“Some of the very best health sites are produced by just such ‘medically unqualified’ persons.”
“The patients who produce these sites certainly don’t know everything a physician might know, but they don’t need to. Good clinicians must have an in-depth working knowledge of the ills they see frequently, and must know at least a little about hundreds of conditions they rarely or never see.
“Online self-helpers, on the other hand will typically know only about their own disease, but some will have an impressive and up-to-date knowledge of the best sources, centers, treatments, research and specialists for this condition.
“And when it comes to aspects of illness that some clinicians may consider secondary – such as practical coping tips or the psychological and social aspects of living with the condition – some experienced self-helpers can provide other patients with particularly helpful advice.
“The things clinicians know and the things self-helpers know can complement each other in some interesting and useful ways.
“The take-home lesson: Being qualified to provide clinical care is neither a requirement nor a guarantee of proficiency in creating useful and effective online health resources. Quality standards developed for other media, while useful in many respects, do not provide a complete solution to quality concerns in the online world.
“New methods of online quality control are emerging. Both health professionals and lay self-helpers are capable of creating reliable and useful sites.”
Dr. Tom also described interviewing an online self-helper named Samantha Scolamiero ( a brain tumor survivor and founder of Brain Tumor Mailing List) for his book, Health Online. Samantha explained to him:
“Layfolk and professionals alike have moved beyond the old, obsolete mindset that holds only certain ‘qualified’ medical professionals may create and disseminate medical information.
“We layfolk are learning that we are qualified through our experience, our knowledge and our concern.
“We now see that we are capable of contributions no professional can make, and that by linking our efforts [with those of professionals] in a coordinated team, we can advance the wellbeing of all.”
When he became a patient himself, Dr. Tom survived 15 years with a diagnosis of multiple myeloma, far exceeding typical survival expectations. He relentlessly pursued strategies for both his own self-care and the newest research and experimental practices for controlling this aggressive cancer. As his obituary reminded us, Dr. Tom led a migration of medical consumer information to the internet (between his relapses and debilitating treatments), lectured widely on the emerging field of “health informatics”, and earned a global reputation as a true innovator and pioneer in the field.
After Dr. Tom died on April 14, 2006, his obituary in the Austin American-Statesman described him in this way:
“Dr. Ferguson virtually led the movement to advocate informed self-care as the starting point for good health, and to promote a new kind of relationship between knowledgeable medical consumers and medical professionals.
“His goal was to encourage medical professionals to treat clients as equal partners in achieving better outcomes, and change the entrenched practices of the traditional top-down hierarchy of the doctor-patient relationship.”
When I re-read several of Dr. Tom’s articles recently (most – astonishingly! – had been written decades ago), I was gobsmacked when I realized that, to some physicians, his notion of patients as “empowered medical consumers” still seems revolutionary and even a tad heretical.
It must be said here that, when it comes to health information, there is a lot of embarrassingly bad stuff floating around online.
And it’s not just all those poorly written personal blogs flogging magical health products or therapies to vulnerable heart patients that make me cringe.
I have found snake oil salesmen, some with the letters M.D. after their names pushing their own miracle-cure supplements and “meditative mood spray” on their self-promoting websites. I’ve found conflict of interest fine print at the end of medical journal papers revealing that the lead author of the study (and even the writers of treatment protocol guidelines) may be on the take from the drug company whose product he/she is studying.
The U.S. Office of Disease Prevention and Health Promotion, working with industry experts, has identified six types of information that should be publicly disclosed to online health seekers:
the identity of the website’s sponsors, if any
the website’s purpose
the source of the health information provided
privacy policies to protect users’ personal information
how users can provide feedback
how the content is updated
For more on this, see also: Health Information Online: How To Tell the Trash From the Truth
NOTE FROM CAROLYN: I wrote much more about how patients can seek credible self-care strategies in my book, “A Woman’s Guide to Living with Heart Disease” . You can ask for it at your local bookshop, or order it online (paperback, hardcover or e-book) at Amazon – or order it directly from my publisher, Johns Hopkins University Press (use their code HTWN to save 30% off the list price).
* Originally published in The Ferguson Report, Number 5, July 1999
Q: What are some of your favourite “self-helper” resources online?