Mr. HISTalk has a pair

I've been somewhat concerned about the HISTalk blog site becoming HIT ad revenue-beholden in recent years, perhaps diluting its critique of HIT industry dysfunction.

However, after seeing these posts today, I am reconsidering that impression (comments in red are mine).

On why physicians are ignored in HIT decisions:

... Because that’s what IT executives do (no offense to those CIOs who really do give physicians a strong voice in decision-making). I’ve been on that IT side and the working assumptions where I’ve been were that doctors and nurses (a) don’t understand organizational strategy; (b) are too easily swayed by demo eye candy and insincere vendor promises; (c) understand only products themselves and not the big picture IT world of vendor stability, product positioning, and integration; and (d) don’t appreciate IT’s technology, support, and organizational challenges. [In other words, are basically stupid; see my 1999-ish piece on doctor stereotypes here - ed.] I’ve worked in three places where users were invited to review and recommend clinical systems. In every one, the first choice of doctors and nurses wasn’t the one that was purchased because we IT folks (some of whom were held in very high regard, mostly by themselves and their easily influenced peers) were so much more knowledgeable that we had the right … no, the obligation … to override them to buy what we thought was the best system. Their resulting adoption was about what you would expect. CIOs are often fixated on buying whatever will cause them the fewest headaches or that carries the lowest organization risk. [I would not dismiss the potential influence of conflict of interest as well - ed.]

on CCHIT:

Some anonymous blog commenters (not here) are demanding that Mark Leavitt step down from his role as CCHIT chairman, claiming his history with HIMSS will always taint CCHIT. My thoughts: I agree. HIMSS wisely used its clout to create CCHIT in its image and nurture it through general acceptance to advance its own agenda, but the strings need to be cut now (including replacing Steve Lieber as CCHIT board chair). I predicted when CCHIT was created that it wouldn’t really change the industry because the interoperability changes CCHIT was supposed to certify (and nothing more) weren’t capabilities customers cared about anyway. That’s what has happened, at least from my cheap seat. Now that CCHIT indirectly affects billions in stimulus dollars, I’d rather see it run by people with no trade group or vendor connections. If it isn’t willing to do that, I’d say choose or form another group to run the certification program. Some of what CCHIT wants to measure, report, or certify (functionality, security, specialty capabilities) is going way beyond what the government should be mandating anyway, although this particular government seems to enjoy telling carmakers and banks how to run their affairs (kind of like letting the Mafia buy into your business). It’s funny that the industry has fought tooth and nail to avoid FDA oversight that it couldn’t control, but seems to like CCHIT because it removes some competitors and sends innovation to the back of the line. [I largely agree with the caveat that the #1 issue for me is clinical IT safety -- primum non nocerum -- and also recently found part of CCHIT leader Mark Leavitt's response to my pointed questions patronizing and a bit hysterical. Sign of a leader who can't handle the pressure of public scrutiny and controversy without blowing up? My early mentor, cardiovascular surgeon Dr. Victor P. Satinsky, had a rule in medicine - "If you don't like it, don't come" - i.e., if you can't take the heat, get out of the kitchen - ed.]

Regarding Mr. HisTalk's comments: wow.

-- SS

BLOGSCAN - How the healthcare blogosphere was scammed

Scams in healthcare are not just limited to insurers, hospitals and clinicians. The blogosphere itself can be victimized.

At Dr. Val's blog "Getting Better" in a post entitled "How The Health Blogosphere Was Scammed", we learn that a blog aggregator company called Wellsphere promised to help bloggers better distribute their content, achieve higher recognition, etc. It sent out seductive, complementary letters made to appear as if done individually, and an invitation to submit content with the following onerous provision in the electronic fine print (only seen if a 'terms of service' link is clicked):

When you post your own copyrightable content on the Website or give Wellsphere permission to post your copyrightable content on the Website, you retain ownership of any copyright you claim to your submitted content. However, by posting your content or giving Wellsphere permission to post your content you automatically grant Wellsphere a royalty-free, paid-up, non-exclusive, worldwide, irrevocable, perpetual license to (i) use, make, sell, offer to sell, have made, and further sublicense any such User Materials, and (ii) reproduce, distribute, create derivative works of, publicly perform and publicly display the User Materials in any medium or format, whether now known or later developed…

In other words, you retain your copyright to your IP, except grant the company the ability to do anything they want with your material, with no reimbursement to you if they make money, and you also allow the company to distribute and sublicense your material to anyone they please, your copyright be damned.

One wonders if they would appreciate such 'fine print' in a patient informed consent form:

"During the surgery you retain ownership of your organs, but if we find one we like we reserve the right to sell it to someone else for their own use."

The company was then sold, and bloggers found themselves estranged from benefit and control of their own IP.

The following list of posts on this issue comes from Deliberate Ambiguity:

• Health bloggers bite back as Wellsphere sells on posts provided for free - a good summary post with links to other important blog posts
• How the health blogosphere was scammed - a great post with e-mails from Wellsphere and snippets from their ToS
• All is not Well(sphere) - a personal commentary from a blogger who feels they were scammed
• The Wellsphere blogging controversy - a great explanation of the psychology behind Wellsphere
• My email to Wellsphere and HealthCentral - an open letter to the companies expressing her concern with Wellsphere's program
• New Wellsphere badges - a blogger made some new badges for Wellsphere. I included one in this post.
• #wellsphere on Twitter - to follow the latest conversations. It tends to light up like a Christmas Tree.
  

Hedge funds, anyone? I know a good one that promises 12% returns every year, even in economic downturns, that uses a secret strategy for investing developed by some genius level programmers.

-- SS

BLOGSCAN -PharmaLot Bows Out

Say it ain't so, Ed. PharmaLot, one of the best health care blogs, in my humble opinion, and the premiere news blog about the pharmaceutical industry, is ending its run. Its author, Ed Silverman, took a buyout from the Newark Star-Ledger, the blog's parent organization. I hope somehow, somewhere, a replacement spring up, and that Ed Silverman goes on to bigger and better things. So long, Ed, we'll miss you.

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