Reliable health info from the ‘medically unqualified’?

16 Jun

by Carolyn Thomas     @HeartSisters

“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.

IMPORTANT CAVEAT:  It must now 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 studies revealing that the lead author of the study is 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: One reliable way to assess if medical websites run by both physicians and “medically unqualified individuals” contain trustworthy health information is to look for the Health On The Net Code logo, a content quality designation earned by thousands of sites from 102 countries so far, acknowledging that a qualified site has passed stringent certification criteria from this European-based health care information monitoring non-profit.

See also:

* Originally published in The Ferguson Report, Number 5, July 1999

l

Q:  What are some of your favourite “self-helper” resources online?

q

l

6 Responses to “Reliable health info from the ‘medically unqualified’?”

  1. Shaneequa June 24, 2012 at 5:24 pm #

    Very interesting article – Dr. Tom’s thoughts about “empowered patients” have reminded me to say CONGRATULATIONS to you on your recent news about winning a Stanford University MedicineX Conference scholarship.

    I checked out the link to check out some of the other “e-Patients” who won these scholarships. Stanford chose well! all of them are what I would call “true scholars” in that they are ordinary patients who, just like you, devoted themselves to learning as much as they could about their medical conditions, and then even better started sharing what they learned to help others in an extraordinary way. Congrats again.

    Like

    • Carolyn Thomas June 26, 2012 at 7:42 pm #

      I agree, Shaneequa – it’s a pretty impressive group of patients invited to attend MedX at Stanford. I’ll be in good company there! Thanks for taking the time to leave such a nice note.

      Like

  2. cave76 June 16, 2012 at 8:24 am #

    This entry has struck so close to home for me I don’t know where to begin!

    I’ve spent a gazillion hours online reading both the good and the bad information and, it’s true, it’s a case of ‘reader beware’.

    And I was ‘gobsmacked’ in a good way to find this site by Carolyn —– who calls a spade a spade. Thank you.

    I (and a few friends) spent hours and hours tracking down the slippery trails snake oil purveyors leave on the Internet, a lot of them involving brief sojourns to Mexico. Don’t yelp! That’s not a racial slur! And way too many had M.D. after their name.

    I had a file called Charlatans where I kept this information and it was huge.

    Now, on to patient support groups. They, also, give some of the best and some of the worst (most dangerous?) information. Most are intent in studiously avoiding anything that smacks of science, preferring to concentrate on telling a member who is having chest pains (not in a heart related group) that they are just stressed out and need to hydrate.

    Oh, I could go on, but I won’t. Where’s my blood pressure cuff?

    Like

    • Carolyn Thomas June 16, 2012 at 8:53 am #

      Thanks so much Cave for sharing your unique perspective here. You’re so right – there’s a lot of outright dangerous info flying around out there. We need to be cautious and careful health consumers. Hope your blood pressure settles down . . . 😉

      Like

Trackbacks/Pingbacks

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  2. Patient-Driven Care - January 2, 2014

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