I am as interested in the negative effects of technology as I am in the positive, so I recently dove into a book by Seth Mnookin: The Panic Virus: A True Story of Medicine, Science, and Fear, which focuses on vaccines.
His summary of the Information Age challenge applies widely:
We can either take it upon ourselves to do a systematic analysis of all the available information – which becomes ever less feasible as the world grows more complex – or we can trust experts and the media to be responsible about the information and advice they provide.
As I read Mnookin’s history of vaccines – including opposition to them – I found myself making comparisons to other examples of populist uprisings in health.
Here’s a line that caught my eye:
Then, as now, [anti-vaccination forces] preached the superiority of beliefs over objective proofs, of knowledge acquired by personal experience rather than through scientific rigor.
Replace “anti-vaccination” with “pro-mammogram” and you’ve got the gist of some breast cancer survivors’ reactions to the 2009 U.S. Preventive Services Task Force recommendation that women in their 40s do not need routine mammograms.
Kristin Barker, a sociologist at Oregon State University, co-wrote a study about the public reaction to this recommendation, “Dead by 50: Lay expertise and breast cancer screening” (PDF). As she told HealthDay: “On the one hand, you had the science that was saying mammography for women in their 40s might not be as effective as we thought, and on the other hand, you had the personal experiences of the women who believed they were saved by having a mammogram.”
I highly recommend reading the full study. Barker and her co-author Tasha Galardi beautifully unpack the issues and don’t stint on describing the limitations of their work. For example, they studied only public breast cancer sites, completely open to search engines, with no registration requirements. Did outrage reach the same decibel level on closed breast cancer forums? What was the reaction among women who discussed the recommendations in non-breast cancer online forums?
This relates to other questions which kept coming up as I read The Panic Virus: Where would someone go to find a science-based discussion of vaccines? What’s the online opposite of Mothering magazine and “Dr. Bob” Sears, which Mnookin writes about in damning detail as purveyors of misinformation? If a respected journal like the Lancet couldn’t be trusted to properly vet the evidence, publishing the spurious Wakefield paper, then what source can be trusted? What role do search engines play in guiding people to certain sites? What role do citizens play? What role does the mainstream press play? What role do clinicians play?
Mnookin addresses some of these questions in his book and in even more pointedly in an op-ed published in The Washington Post, “An early cure for parents’ vaccine panic.” He argues that prenatal care should include vaccination education so parents can consider the evidence when they are not sleep-deprived or facing the needle with a newborn in their arms. That’s a strategy that resonates with Pew Internet’s research showing that health professionals continue to hold sway for the vast majority of U.S. adults with health questions.
But what about people who supplement their doctors’ advice by doing their own research? When Pew Internet measured interest in information about immunizations or vaccinations, 16% of internet users said they had looked for this type of information online. Not surprisingly, the group researching vaccination online skews young: 18% of internet users between the ages of 18-49 say yes to this question, compared with 12% of 50-64 year-old internet users and just 7% of internet users ages 65 and older. The group also skews toward being more educated: 19% of internet users with a college degree say they have looked online for information about vaccinations, compared with 13% of internet users with a high school diploma.
What are they finding in those searches? How do they judge the quality of information they find? More broadly, does the benefit of greater access to information outweigh the costs?
One reason I chose to read The Panic Virus was to immerse myself in a topic that is, in fact, wreaking a significant cost in the U.S. and in other countries. Vaccination rates have fallen, nearly-forgotten diseases are on the rise, lots of people are confused and frustrated – and the internet is certainly playing a role, speeding up the spread of information and helping like-minded people to find each other (on all sides).
We can’t go back to pre-internet days, nor would I wish for that outcome, but after reading The Panic Virus I have new respect for the dangers of misinformation, even if the original source was a prestigious, peer-reviewed medical journal.
e-Patient Dave says
Fabulous. Fabulous, fabulous, fabulous. You just unloaded a truckload of thoughts in MY mind, except you did it in a better-informed way.
The e-patient white paper cites that Eysenbach found zero cases of “death by googling,” a decade ago (lethally bad info online). I suspect the vaccine situation has changed that.
Is there a comparable study of the pro-anorexia movement?
Susannah Fox says
Great point. I have seen multiple attempts to study the pro-ana sites and measure their impact. Here’s one American Journal of Public Health Article looking at the content of such sites:
e-Ana and e-Mia: A Content Analysis of Pro-Eating Disorder Web Sites
(AJPH 2010; 100:8 1526-1534)
Self-injury in general is a scary topic – here’s a study looking at how YouTube has expanded people’s access to how-to videos and the like:
The Scope of Nonsuicidal Self-Injury on YouTube (Pediatrics. Vol. 127 No. 3 March 1, 2011)
I’d be interested to hear about negative outcome studies, though, not just “whoa, look at how widespread this information is now” studies.
e-Patient Dave says
> outcome studies not just “Whoa”
Agreed! Both are important steps in awakenings.
Gilles Frydman says
the role of the internet was never to make irrational people behave rationally, but it is working fantastically to help rational people get a better handle at obtaining reliable information presenting all POV.
What fascinates me most about the anti-vaccine movement is their reliance on celebrities as source of validated “truth”. This simple fact, by definition, put anything said by these celebrities in the “highly doubtful” bin for anyone who is reasonably interested in the scientific method.
Wakefield is a crook and we’ve know that for years. The Lancet is holding special responsibility in refusing to issue a strongly worded retraction for all these years. But the celebrities and their groupies are those who transformed this bad scientific behavior into a popular movement.
Unlike Dave, I don’t think the anti-autism movement has proven that “death by googling” is a valuable term. Fundamentalists will always be fundamentalists, with or without the internet. This is just another story about fundamentalism. Digital literacy is a great answer against advocates of fundamentalist theories.
Gilles Frydman says
“If a respected journal like the Lancet couldn’t be trusted to properly vet the evidence, publishing the spurious Wakefield paper, then what source can be trusted? ”
The Wakefield paper is not spurious. It is pure fraud. I would say that without the internet and the massive push by the scientific world to surface this complex fraud, the Lancet would have had no reason to finally issue a full retraction of the paper. So, in this case, like in many others, the internet is fulfilling its role as the greatest tool ever invented to disseminate to anyone important refutations of previous misconceptions. It took time, but informed parents & public health officials now have all the information necessary to not be driven by irrational fears when thinking of vaccines. You should ask John Ioannidis. I wouldn’t be surprised if he agrees with my opinion.
Susannah Fox says
Aaaaand, this is why I write blog posts, so readers will make me smarter by commenting. Thanks, Gilles!
All, here is an Atlantic profile of John Ioannidis:
I take your point that the internet plays a key role in exposing misinformation – and not just in health, of course – but we are still living with the after-effects of the Wakefield paper. And the [insert your favorite disproved theory here] paper.
Digital literacy is massively important. I’m also thinking a lot these days about the “filter bubble” – what do people see when they look online for “vaccines,” for example?
Gilles Frydman says
Thank you for writing this post. It’s a very important topic.
I am not sure I would put the Mammography recommendation in the same page with any reference to Wakefield though:-) But I paid particular attention to the clear manipulation of patient communities (non-ACOR since we don’t have active BC groups) by some of their owners when the recommendation came out. These communities moved instantly, and probably without the real understanding of many of their users, from information source to quasi-lobbying force. This kind of internet manipulation is, IMO, potentially worse than what Wakefield did, since it is done by people reputed to be good clinicians or high level patient advocates, therefore no longer critically assessed by many. It was very disheartening to see these people dropping all scientific methodology, in an instant, for what I can only assume is bias motivated by the ever present will to defend one’s established business environment
John Sharp says
The negative consequences of the internet and social media on the rapid dissemination of health care information is well described in this post and comments. Unfortunately, there are more examples appearing of misuses of this technology, for example, I recently received a forwarded email which claimed to be from Johns Hopkins about “the real truth about cancer” which was neither from Hopkins nor largely true. We must not forget the advantages of having vetted health care information online which has benefited millions. The question is how to guard against misinformation? Promoting critical thinking in a sound bite media environment is tough but something that the Society of Participatory Medicine does promote.
Gilles Frydman says
I am convinced that actively promoting critical thinking as part of educating the public at large about digital literacy will bring much more bang for the buck that continuing to promote vetted health care information. At least for cancer, if it is vetted it is already too old to be of real help to many patients, those who have failed treatments for example. The vetting is done by entities that all have a bias and asking people to understand that bias is just impossible. Dave’s story, going to WebMD and then Mayo websites and reading scary stories that wouldn’t even mention IL-2 as one of the possible treatments is a classic. A classic I see repeated almost daily.
Sherry Reynolds @cascadia says
Speaking of vaccines – It would be interesting to see some research on the HPV vaccine and how women’s groups have been utilized to spread its use.
Fact: Cervical cancer is detectable by pap smears and 100% treatable. HPV is the most common sexually transmitted virus in the United States.
Assumption: Almost all cervical cancers are “caused” or “associated” with HPV (human papilloma virus)NOTE: nearly everyone who is sexually active will contract HPV but nearly everyone clears it on their own. It is somewhat similar to getting a cold, a tiny % will develop pneumonia and die but we don’t vaccinate everyone for the virus that causes pneumonia.
We are now vaccinating millions of young women (and now young men)at a cost of 900 per 3 injections in the hopes that it will prevent the HPV virus that is linked to cervical cancer 30 years later. Unfortunately the kids we are vaccinating aren’t the part of the population that typically gets cervical cancer (linked to the HPV virus).
Most women who are diagnosed with cervical cancer today have not had regular Pap smears or they have not followed up on abnormal Pap smear results. In other words we are vaccinating the wrong people. There are no long term studies and no one is sure that it will work. BTW – Once a vaccine is mandated by the States vaccine manufacturers are protected from any lawsuits.
Gilles Frydman says
interesting comment! You may or may not have a point regarding this vaccination. When presented with the evidence a few years back it appeared that enough studies demonstrated the value of this preventive treatment. Are you telling me I was mislead?