Citizen Journalism: Why I Blog on Healthcare Informatics

I am teaching my current students about alternate media, a.k.a. citizen journalism, also known as "blogging", in a course on organizational and social aspects of healthcare informatics.

I am using a (de-identified) personal experience as an example of why alternate media is valuable in getting "inconvenient" memes into circulation.

In addition to recent articles such as "The Problems with Peer Review" (in the British Medical Journal by Mark Henderson, Science Editor, the Times, London. BMJ 2010;340:c1409), "Ghostwriting at Elite Academic Medical Centers in the United States" (LaCasse & Leo, PLoS Medicine, February 2010, Volume 7, Issue 2) and others about ghostwriting and other ills affecting the conventional biomedical literature, I provided my students the personal example below.

I thought the example might be interesting to blog readers as well.

Here is the example I used with my students:

Regarding a paper I wrote a few years ago and that I ultimately simply posted on Scribd, "Remediating an Unintended Consequence of Healthcare IT: A Dearth of Data on Unintended Consequences of Healthcare IT" (link), an anonymous peer reviewer had this to say when I submitted it to "journal XYZ":

Comments to the Author

This paper addresses a potentially important issue but adds little that is new or that goes beyond what a reader might find in a major city newspaper. Proposing a classification of sources of UC and analysis of reasons for undereporting of each type in the resulting classification could be a useful addition to the field.

This was certainly an ironic if not bizarre comment. A paper on a scarcity of data on unintended consequences of health IT due to a "closed culture" in the HIT industry does not add anything new "beyond what one might find in a major city newspaper?"

Unfortunately, the anonymous peer review process does not allow me to ask what newspaper this reviewer reads, but it was clear to me this reviewer was 1) attempting to prevent the paper's publication and 2) "moving the goalposts" to delay it or have the focus on scarcity removed by seeking for me to "propose a classification of sources of UC" (tangential or even irrelevant to the paper's topic).

I felt it likely the review of a revised paper by this reviewer would have led to negative comments on any proposed classification schema.

Worse, was this, in a dialog via several emails I've condensed for readability. It is very likely it came from the same reviewer above:

EDITOR OF JOURNAL XYZ: I suggest Scot that you modify this into an editorial. One reviewer recognized the writing and asked me if this may have been pre-published on a blog. Any possibility for that?

In other words, I was being accused by the anonymous reviewer of possibly violating the ethics of journal publication and the contract I signed to not pre-publish (the journal has exclusive rights).

My response:

SS: No, this work was entirely original, written from a clean slate, and was not pre-published on a blog. I would think the reviewers would know me better than that in terms of integrity.

The editor shot back:

EDITOR: My response as well. Good - looking forward to the edits. Happy snow day

I reminded the editor:

SS: Not to mention the extensive footnotes showing where I sourced my material. In an age of search engines, I have to ask the following:

- was the person who raised this concern so technologically limited they were unable to search themselves to answer their own question?
- did this person have such a lack of trust they felt compelled to make such a statement?
- did this person raise this due to bias against the fundamental thesis of the paper?

I think it's fair to say there is very, very strong pushback against articles such as this being published. I have to consider whether it's worth my while to continue, or to withdraw the paper.

At which point I received the following revealing comment from the editor:

EDITOR: I think, Scot, that you have a talent for sniffing out problems, dangers, risk, failures and by addressing them in your head on ways, you are likely to make enemies. You are doing a valuable job, but you have to realize that people are threatened by you. That's why the respond in this manner. Not that it is excusable, but it is understandable.

I decided it was not worth revising the paper due to that reviewer's comments and the editor's observations, and therefore disseminated the paper via the Healthcare Renewal blog and Scribd.

(I note that "making enemies" by directly confronting possible risks of a new technology in healthcare suggests skewed priorities among those so affected.)

While I believe the current Wikileaks web exposures have gone insanely too far, as those incidents involved exposure of sensitive material held illegally that could people to be harmed, damage international relations, and cause other unforeseen ill effects, the web has proven valuable for dissemination of one's ideas that have not been able to escape the gravity of the sometimes "peer review Black Hole."

-- SS

MHRA Report on Influence of Healthcare Blogs

Below is a link to an MHRA-sponsored report (Medicines and Healthcare products Regulatory Agency, the UK equivalent of the FDA) on the "top influencers" in healthcare thinking, including blogs such as this one, Healthcare Renewal.

The MHRA report is here:  link (PDF)

The report is based on data collected regarding seroxat. The results are possibly reflective of, or proportional to, influence on other biomedical topics as well.

It was prepared for the MHRA by Market Sentinel, a company specializing in:

... measuring, monitoring and benchmarking influence in relation to issues, brands and companies. This includes social media monitoring (blogs and messageboards) but is not limited to it. We provide clients in the public and private sector with hard facts that enable them to better understand the playing field; more effectively bring their messages to market and increase their influence ...

... in addition to services such as reputation and crisis management, and optimization of customer targeting in advertising campaigns.The MHRA report became became publicly available after a UK Freedom of Information request, apparently by someone concerned about the seroxat controversy. The full Freedom of Information release containing the report is here (also PDF). The report begins at page 215 of the release, after a somewhat curious, identity-redacted email that states:

"Our intention is not so much to track retail opinion so to speak - the opinion of random unqualified individuals - but to track the opinions of those who matt[er], those with a demonstrated following. Our hypothesis is that it is these "influencers" whose opinions will reach the rest of the world.

We have not so far made recommendations as to who to target amongst these stakeholders, preferring to speak first about the message you wish them to receive."

I presume the "Our" and the "We" refer to Market Sentinel, and the "you" to someone at MHRA or perhaps seroxat manufacturer GlaxoSmithKline in an attempt at "reputational repair" over the seroxat controversy, but this is unclear.

In any case, it appears the Market Sentinel Report was not prepared as a purely academic exercise.
Health care bloggers appear to be doing well, a finding that does not surprise me, aware as I am of the growing influence and power of the political blogs.That healthcare bloggers in general appear to be doing well is a desirable observation, considering the increasing distortion of the biomedical literature by commercial interests that makes attainment of true "evidence based medicine" more difficult.

It is also desirable from the perspective of the "group think" aspect of the peer review process that makes publication of opinion, even well-documented opinion, sometimes impossible if the opinion is "politically incorrect" and/or runs contrary to the collective wisdom, collective exuberance - or the collective pocketbook.

My posts on Medical Informatics and healthcare IT problems, for example, would probably never make it through peer review in the informatics community. They challenge the dominant paradigms and what I believe to be the irrational exuberance over the technology.

I do not write about that issue lightly or without evidence. The American Medical Informatics Association, as just one example, recently decided it would not publish a book on HIT difficulty by several members of the Clinical Information Systems Workgroup in a style similar to my website on that topic (i.e., anonymized, fine-grained case examples), itself a resource that would have been impossible before the Web. The group had to go elsewhere.

I also highly doubt the posts of my colleagues about healthcare corruption and loss of core values would make it past peer review in most mainstream journals, especially in a fashion that would form an "anti anechoic effect" repository or aggregation of such cases.
Healthcare Renewal came out relatively high in influence on the MHRA-commissioned report on seroxat:

... Mainstream media accounts for 30% of the top 100 stakeholders. Media coverage of MHRA is neutral to mildly negative, with the force of emotion mainly targeted at GSK.

The second largest group is bloggers who account for 23% of the 100 most influential stakeholders. The blogs are either written by insiders in the pharmaceutical industry (Doctors, Researchers, Journalists etc) or by individuals who have experienced the effects of Seroxat first hand. Of the industry bloggers, 72% are from the USA and the rest are UK based. For the personal experience bloggers, 60% are based in the UK and the remainder is in the USA.

78% of blogs in the top 100 are written by industry insiders. The most influential industry blog is the American based Health Care Renewal blog. Contributed to by a group of health care professionals, it tackles issues which call into question the values of the health industry.

A highly influential industry blogger is Aubrey Blumsohn who writes the Scientific Misconduct Blog. Not only is he ranked high in influence, but his blog ranks the highest in terms of betweeness’ which measures how many different paths go through a specific stakeholder. Blumsohn is what Malcolm Gladwell would call a “connector”. His old blog, thejabberwock, is still often cited, despite the fact that it is no-longer regularly updated.

Blogger Bob Fiddaman is dedicated to raising the profile of the side effects of Seroxat and regularly posts comments on other blogs, which in turn increases his on-line sphere of influence. A further individual blogger who is highly influential is the author of the Seroxat secrets blog. The entire blog is dedicated to discussing and publishing any issues surrounding the drug, MHRA and GSK.

After Mainstream media and Bloggers, distribution of influence is shared between 12 groups, some of which exist to support those working in the health care industry by supplying information and support ...

Of interest is the citation analysis-like "stakeholder analysis" method used to rate the influence of various Old and New Media outlets. Here is a "stakeholder map" of the top influencers, showing connectedness and information flows (see the MHRA report linked above for a full explanation):

(click diagram to enlarge)

Healthcare Renewal is the red circle at the mid-right network border; size of each node reflects relative influence.Some stats from the report as highlighted by colleague Roy Poses:This blog ranked as 13 in the table of "top influencers." Other highly influential blogs included some cited by us, and/or are on our side-bar list of links. On the ranking of top influencers, Health Care Renewal outranked the Wall Street Journal, Reuters, the UK Times, Nature, Forbes the UK Telegraph, the Annals of Internal Medicine, the Canadian Medical Association Journal, and ABC News, among well known publications. On the ranking of "popular stakeholders," Health Care Renewal came in at 27. We out-ranked Reuters, the UK Times, Nature, CNN, Forbes, the UK Telegraph, and the Canadian Medical Association Journal.

Considering there were only a few posts here on the seroxat controversy, this may have to do with "trustedness" -- i.e., "goodwill" of a sort generated by the plain language, sunlight-as-best-disinfectant coverage of many other issues -- on the hyperlink-driven access patterns and information flows.
The stakeholder analysis shares some aspects of the longitudinal citation analysis methodology such as used to trace the flow of ideas here, but in a hyperlinked web context:

Citation analysis is the examination of the frequency, patterns and graphs of citations in articles and books.[1] [2] It uses citations in scholarly works to establish links to other works or other researchers. It is one of the most widely used methods of bibliometrics. Automated citation analysis has changed the nature of the research allowing millions of citations to be analyzed for large scale patterns.

[1] Rubin, Richard E. Foundations of Library and Information Science 2nd ed. New York: Neal-Schuman, 2004.
[2] Garfield, E. Citation Indexing - Its Theory and Application in Science, Technology and Humanities Philadelphia:ISI Press, 1983.

Although the MHRA-sponsored study has its limitations, blogs can indeed be quite influential. This is a lesson painfully learned by some prominent mainstream media newspeople, politicians, and others.

Perhaps HC blogs should not be dismissed as the work of pajama-clad novice journalists dabbling in their bedrooms.

(The existence of firms specializing in "social media monitoring" suggests that this is starting to be understood in some sectors.)

-- SS