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

Post Title → Mr. HISTalk has a pair

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

Post Title → BLOGSCAN - How the healthcare blogosphere was scammed

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.

Post Title → BLOGSCAN -PharmaLot Bows Out

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

Post Title → MHRA Report on Influence of Healthcare Blogs

Health Care Renewal Bloggers to Present

Health Care Renewal bloggers are scheduled to make some presentations this spring.

First, I will be participating in a special symposium on comparative effectiveness research at the Society for General Internal Medicine (SGIM) annual meeting in Pittsburgh, PA, USA. The session will be on Friday, April 11, 2008 from 10:30 AM - Noon, co-sponsored by the Sydenham Society, entitled, "Comparative Effectiveness: What, How, and Who?" I will be emphasizing the importance of transparency and avoiding conflicts of interest.

Second, Dr Wally R Smith and I will be presenting a short course on challenges and threats to evidence-based practice at the European meeting of the Society for Medicine Decision Making (SMDM) in Engleberg, Switzerland. The session will be on Sunday, June 1, 2008, and is entitled, "Why Aren’t Physicians’ Practices Evidence-Based? - Cognitive and Environmental Challenges to Evidence-Based Practice."

Post Title → Health Care Renewal Bloggers to Present

BLOGSCAN - Maggie Mahar's Health Beat Blog

Maggie Mahar, author of Money-Driven Medicine, one of the best of the current crop of books about the dysfunctional US health system, now has a blog. It's called Health Beat, and went live August 7, although most posts on it were from yesterday. Maggie had previously guest-blogged on The Health Care Blog. We welcome her feisty voice in the health care blogsphere.

Post Title → BLOGSCAN - Maggie Mahar's Health Beat Blog

BLOGSCAN - Exclusive Interview with PharmaGossip's "Jack Friday"

On BrandweekNRX, this post includes an interview with the secretive anonymous writer of PharmaGossip. PharmaGossip is a must read for anyone interested in the reality, good and bad, of life in the pharmaceutical industry. The blog has been vigorous in its pursuit of mismanagement, conflicts of interest, and corruption affecting the leadership of the industry. Thus this interview should be of particular interest to readers of Health Care Renewal, even if it doesn't provide many clues to the identity of "Jack Friday."

Post Title → BLOGSCAN - Exclusive Interview with PharmaGossip's "Jack Friday"

Thinking Blogger Award

Health Care Renewal has now been nominated for a Thinking Blogger Award three times, from PharmaGossip, Clinical Psychology and Psychiatry, and Seroxat Sufferers. Thanks to all for the honor!

In return, we are expected to nominate five more blogs that have not yet received the award.

I do have to note that many of our favorite blogs have already been cited. But there are more who are deserving. So I nominate, in alphabetical order:

DB's Medical Rants

MedPundit

Two of the first general medical blogs, with lots of interesting commentary about the real world of medicine

GoozNews

Lots of interesting health care/ policy posts, with emphasis on conflicts of interest problems

Running a Hospital

Truly unique - a hospital CEO who tells it like it is

The Torch

FIRE's in-house multi-author blog on academic freedom, due process for students and faculty, freedom of conscience, etc

Post Title → Thinking Blogger Award

Health Care Renewal Bloggers and Others Expand Discussion of Conflicts of Interest

JAMA just published a set of letters in response to the January article by Brennan et al about conflicts of interest (JAMA 2006; 295: 2845-2849). Basically, Brennan and colleagues focussed on conflicts of interest involving pharmaceutical and device companies that affected practicing and academic physicians. They called for the abolition of certain financial arrangements between doctors and these companies, and for transferring other arrangements to academic medical centers (AMCs). Furthermore, they called for AMCs to be empowered to enforce the new rules. (See: Brennan TA et al. Health industry practices that create conflicts of interest: a policy proposal for academic medical centers. JAMA 2006; 295: 429-433.)

The letter by three of us Health Care Renewal bloggers, mirroring my previous blog posting, noted that physicians may be affected by conflicts of interest involving organizations other than pharmaceutical and device manufacturers, particularly managed care organizations. In addition, we noted a variety of conflicts of interest could affect health care decision makers other than physicians, notably, leaders of AMCs. Thus, we called for a broad code of conduct for all health care decisionmakers that would address all kinds of conflicts of interest.

Other letters also pointed out the spectrum of conflicts of interest is larger than that discussed by Brennan et al. They noted other sources of conflicts including: clinical income, NIH grants, advertisements in medical journals, and grants to AMCs and mediacal scientific societies (Meader); pharmaceutical advertising directed at physicians (Gozum) and other pharmaceutical promotional practices so directed (Ting); and pharmaceutical company financing of graduate medical education (Goldblum and Franzblau, and Watson and colleagues). They noted other barriers to implementing the reforms suggested by Brennan et al: a culture of entitlement among faculty physicians; (Watson and colleagues); and AMCs need for funding (Watson and colleagues, and Brody). Finally, Angell noted that Brennan and colleagues' estimates of the amount of money pharmaceutical companies spend on marketing may have actually been very low.

Not to toot our own horn too much, we hope that this set of letters has enlarged the scope of discussion of conflicts of interest affecting not only physicians but also the leaders of health care organizations.

Post Title → Health Care Renewal Bloggers and Others Expand Discussion of Conflicts of Interest

Dental Student Suspended for Blogging

At Marquette University, dental student Theodore Schrubbe has been suspended, required to repeat a semester (costing $14,000 in tuition), and threatened with expulsion. (See reports in the Milwaukee Journal-Sentinel, the Badger Herald, and the Marquette Tribune.)

His offense? - He posted uncomplimentary comments about an unidentified professor and some unidentified class-mates on his blog.

A University committee found him "guilty of professional misconduct in violation of the dental school's Code of Ethics and Professional Conduct," and supposedly of violating a university rule against "stalking, hazing, or harassments." The Code includes provisions requiring students "to conduct interactions with each other, with patients and with others in a manner that promotes understanding and trust." It condemned "actions, which in any way discriminate against or favor any group or are harassing in nature."

These actions have already come under fire from defenders of free speech. Another student blogger at Marquette said the action would have "a chilling effect on free speech and free expression." Mark Goodman of the Student Press Law Center said, "This decision raises serious questions about the school's commitment to free expression. If the university has the ability to punish students for expression that occurs outside of class and school-sponsored events, they are really controlling students' lives." Daniel D'Angelo, an adjunct faculty member at Marquette, and a c0-director of its Ethics and Professionalism curriculum, wrote, "what he [the student] wrote was imprudent, immature, and oftentimes distasteful. But ... it doesn't make these entries unethical or immoral."

Schrubbe has appealed the matter within the Marquette system.

This case illustrates how at academic health care institutions, codes of "professionalism" can be twisted into a speech code, a means to to control free speech and free expression, and how health care professional students may be taught that whatever they do, they can't criticize the powers that be without paying a steep price.

Such enforcement of a speech code seems to be completely in conflict with Marquette's own stated mission, "Our mission, therefore, is the search for truth, the discovery and sharing of knowledge, the fostering of personal and professional excellence, the promotion of a life of faith, and the development of leadership expressed in service to others." One cannot search for truth, or share knowledge, while fearing that saying something displeasing to the powers that be will result in punishment.

FIRE has documented numerous cases of attacks on free speech, free expression, and academic freedom at American colleges and universities.

Health Care Renewal has noted more and more cases suggesting such threats exist in teaching hospitals and medical schools, and may affect even senior faculty. For instance, see the recent cases of Dr Aubrey Blumsohn, and Dr Eric Topol, just to start.

But I'm sure there will be those who will say that these cases just involved trouble-makers. After all, even Schrubbe's defenders allowed that he was "imprudent, immature, and distasteful." And they may be believe all will be fine and dandy in the health care academy, at least once we get rid of difficult people like Schrubbe. What a Brave New World we will have then.

Post Title → Dental Student Suspended for Blogging

Handbook for Bloggers and Cyber-Dissidents

The group Reporters Without Borders (Reporters Sans Frontieres) has just published, electronically, of course, a handbook for bloggers (the link is for th English edition, but versions are available in French, Spanish, Persian, Chinese, and Arabic). It includes a nice brief history and justification for blogging, and some explanation for how to get started in blogging without too much technical know-how. But most striking is its clear orientation for blogging as a way for dissidents and whistleblowers to say things that vested interests might not appreciate. It features a guide to blogging anonymously that documents increasingly secure (and technically complex) methods to preserve anonymity for those who may face retaliation for what they say.
In health care there have been all too frequent examples of secrecy, censorship, and retaliation against whistleblowers of various types. I know there are quite a few people out there who have important information about abusive practices, yet are justifiably afraid to speak up. Such people may want to look at the Handbook for Bloggers and Cyber-Dissidents.

Post Title → Handbook for Bloggers and Cyber-Dissidents

A New Format

We had to change the graphic format of Health Care Renewal. Blogger still has been not come up with a solution of the formatting problems that resulted from their latest soft-ware updates. One such problem put a huge amount of white-space at the top of our blog.
The new format is not perfect, but should be readable, and no longer is dominated by looming white-space.

Post Title → A New Format