Prue Talbot study grossly misrepresents ECF postings on health impacts of e-cigarettes

[Bill Godshall]

An online journal (that I never heard of before) just published a junk science study by Prue Talbot purported to evaluate the health impact of e-cigarettes based upon selective postings on ECF.

Health-Related Effects Reported by Electronic Cigarette Users in Online Forums
JMIR--Health-Related Effects Reported by Electronic Cigarette Users in Online Forums | Hua | Journal of Medical Internet Research

A total of 388 different symptoms were reported by e-cigarette users on the Electronic Cigarette Forum

Of the reported effects, 318 were negative, 69 were positive, and one was neutral

Last month, Talbot presented preliminary results of her junk science study at a toxicology conference.
http://www.e-cigarette-forum.com/fo...dy-ecf-posts-grossly-misrepresents-facts.html

 

[RosaJ]

That's the same website that "published" the other one she did a month ago, isn't it? I think anyone can setup a website and call it anything they want. Is it backed up by a science/medical group that has been around for decades and has built its reputation on publishing real research? I bet not.

Wouldn't put it past BP and now Reynolds to pay moles to sign up and post all kinds of fake medical problems. If they're going to try to at least get some credible data, they should be surveying doctors to find out how many people present with medical issues caused by vaping. Their money would be better spent, yet, who knows, maybe they did already and didn't like the results they got.

Well, I've been vaping and smoke free for more than one year. My health and especially my breathing has improved more than 100%. I don't glow at night either. This is good enough for me.

 

[Petrodus]

The "other" post
http://www.e-cigarette-forum.com/fo...dy-ecf-posts-grossly-misrepresents-facts.html

 

[Lessifer]

Buried in the discussion section are the limitations of the study, which of course they don't mention in the abstract or conclusions. Basically, due to the nature of forums and self reporting the data collected will always be skewed negatively and unreliable, but that's ok, we'll state it as fact anyway since it suits our purpose. ::eye roll::

 

[CES]

the "journal of medical internet research" ...really?

"the first international scientific peer-reviewed journal on all aspects of research, information and communication in the healthcare field using Internet and Internet-related technologies"




yet, under the editorial policies JMIR-Editorial Policies :

"Ethical Issues: Internet-based research raises novel questions of ethics and human dignity. If human subjects are involved, informed consent, protection of privacy and other human rights are further criteria against which the manuscript will be judged. Papers describing investigations on human subjects must include a statement that the study was approved by the institutional review board, in accordance with all applicable regulations, and that informed consent was obtained after the nature and possible consequences of the studies were explained. JMIR is also encouraging articles devoted to the ethics of Internet-based research. In addition, as mentioned in the conflicts of interest[FONT=Verdana, Arial, Helvetica, sans-serif], we will ask authors to disclose any competing interests in relation to their work."[/FONT]


I've posted in the health subforum, and don't remember seeing or signing any informed consent
[FONT=Verdana, Arial, Helvetica, sans-serif] [/FONT]

 

[CES]

Ok..so I just sent this email to the journal editor jmir.editorial.office@gmail.com

Dr. Eysenbach,

I am writing in connection to the recent publication : Health-Related Effects Reported by Electronic Cigarette Users in Online Forums” J Med Internet Res 2013;15(4):e59)

I post in one of the forums mentioned in the article, and have posted in the specific sections that were mined for data in the article. I have two concerns. The first is that as an individual who’s data was likely scanned for use, I did not see or sign an informed consent to allow my data to be used. This appears to be in direct contradiction to your editorial policies.

Secondly, the publication misrepresents the whole of the forums, and of the information contained therein. “A total of 405 different symptoms due to e-cigarette use were reported from three forums. Of these, 78 were positive, 326 were negative, and one was neutral.” Please be aware that the largest of the 3 forums has over 18,000 active members, with ~ 500-1000 members online at any given time and > than 8,000,000 posts in the history of that forum. In that context t “the total number of health-related posts attributed to e-cigarettes (N=543)” is hardly significant. The authors also fail to note that the majority of the negative symptoms reported are transient and minor, and many can be conflated with symptoms associated with smoking cessation.

Thank you

(please don't point out any typos- i never, ever proofread well enough, especially this early in the morning)


ETA: i got an almost immediate response to my email, saying that it will be forwarded to the authors for a response, and asking if i wanted to expand my letter and submit for publication as a letter to the editor. If anyone is interested in helping, send me a PM - letters to the editor can have multiple authors and increase the pressure on the oringinal author to respond.

 

[tiburonfirst]

lol! i guess that's all ces had to see this am!

sorry i can't help since i'm one of the few were negative effects were not transient

but .................. i would revise my numbers and quote the overall membership number of ecf if there were an abundance of detrimental effects i am sure members not active in the last 30 days would have posted. and this is how ecf arrives at the number of active members, i believe. therefore, to me, quoting the number of active members in your reply is misleading

 

[CES]

You're right Tibs. And your allergies are part of why i said "most". I guess that i'd like to provide context for the numbers they report, and where they fit overall scheme of things.

Because they collapsed things into "types" of symptoms, i really should have used some other metric. That's kind of why i need some assistance in fleshing out a better letter. (wait a sec, are you saying my response was misleading because i underreported? Threads 348,072. Posts 8,889,227. Members 128,898. Active Members 18,100 )

 

[TomCatt]

Maybe state the active members # with the overall membership # in parentheses


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[tiburonfirst]

Threads 348,072. Posts 8,889,227. Members 128,898. Active Members 18,100 )

there you go!

 

[tiburonfirst]

Maybe state the active members # with the overall membership # in parentheses


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nope, catt - active members change from month to month. people who reported symptoms a year ago might not be active now and the study used ALL of the reverse effects reported from day one

let's not shortchange ourselves

 

[CES]

the trick is also to compare apples to apples (i hate that metaphor, but anyway)...to really put the things into context it'd be helpful to report the total number of health related posts as compared to the total number of posts. Might have to put a graduate student on it.

But then we run into the question of informed consent, since that's essentially data mining the forum. And i really think that informed consent (and possibly IRB approval if I asked a grad student to do it) is needed to use people's posts/data for any type of publication, even a rebuttal letter.

 

[tiburonfirst]

not knowing how they filtered it won't be easy to decide on the best rebuttal - are those ~300-400 threads or ~300-400 unique symptoms? were they all e-cig related? if i remember right quite a few times analog symptoms and analog withdrawal symptoms were mentioned when i tried to get to the bottom of my problem

 

[CES]

it's really hard to know- i think they pooled types of symptoms reported, but did little or no qualitative analysis beyond classification of symptoms of positive or negative. I have to re-read the paper - particularly the methods- and cross reference with symptoms associated with smoking cessation.

 

[RosaJ]

Did they contact the people they picked to find out if the person had followed up with their doctor and their doctor unequivocally said "yes, your symptoms are the direct result of vaping?" The majority of times, the symptoms they report work themselves out.

I've come across a lot of postings where people complain about sore throats, etc., and they don't come back to follow up on their posts when they've been advised to see their doctor by other members of the forum. Sorry, but this "study" is plain old hogwash. It insults my intelligence.

 

[tiburonfirst]

yup - it is full of unknowns but it is prudent for us to respond. if i get a chance i will try to read the study carefully later on, not just giving it a glance for the highlights, ces

 

[Lessifer]

As I mentioned earlier, the author has a CYA paragraph in the discussion section about the "limitations" of the study. I think, and this is just my opinion, your best shot would be the lack of informed consent.

The study also says that they lumped general "I feel better than when I was smoking" posts together, and basically dismissed them. So, unless someone specifically posted something like: my blood pressure has gone down since I started vaping, it wouldn't have been counted as a positive for the study. The method is grossly flawed in that the researcher sets the parameters for the search, so that the data is skewed before it even begins.

 

[TomCatt]

Just started closely reading this article; but then started to wonder if they read any of the 'does vaping make you fart' threads and had to take a break


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[CES]

Catt

(wiping off computer screen)

that would certainly tie into the GI system

 

[Lessifer]

Yeah this is junk science at it's best/worst. I just did a quick search and it seems like since it was quantitative research and there was no subject/researcher interaction that they may not need informed consent. Much like a defense attorney who asks leading questions to plant seeds of doubt, studies like this are designed to plant the idea without having to deal with a pesky burden of proof.