AMA, BMJ, and the Innovator’s Transparency Rule

By Neil Seeman

As of the time of writing, we do not know all of the facts in the current controversy surrounding the Journal of the American Medical Association (JAMA). Reportedly, JAMA editors threatened a researcher, Jonathan Leo, who had criticized the author of a 2008 JAMA research paper. Dr. Leo’s rebuke appeared in an online letter in the British Medical Journal (BMJ).

The American Medical Association has asked an oversight committee to investigate the events. Dr. Leo, a neuro-anatomy professor at Lincoln Memorial University, alleges that senior JAMA editors threatened him and his dean following his publication of the BMJ letter. Dr. Leo’s BMJ letter criticized how results were reported in the 2008 JAMA study that looked at the use of Lexapro, an anti-depressant medication, in stroke victims. Dr. Leo claimed that JAMA did not appropriately disclose the author of the JAMA study’s financial relationship with Forest Laboratories Inc., the maker of Lexapro. Forest disclosed that it had indeed paid the author for speeches, but maintained that his Lexapro research was independent.

According to Dr. Leo, based in Harrogate, Tennessee, JAMA editors insisted that Leo retract the BMJ letter. Further, in an explosive allegation, he reportedly claims JAMA’s executive deputy editor, Phil Fontanarosa, told him, “You are banned from JAMA for life. You will be sorry.” Dr. Fontanarosa has disputed this version of events. Ray Stowers, the dean of Dr. Leo’s faculty, claims JAMA editor-in-chief Catherine DeAngelis told Stowers during a telephone conversation that she would “ruin the reputation of our medical school” unless Stowers forced Leo to retract the BMJ letter and stop speaking to the media. Dr. DeAngelis has denied this.

Further, in an online editorial on the JAMA Web site, Drs. DeAngelis and Fontanarosa accused Dr. Leo of a “serious ethical breach of confidentiality” by wading into alleged problems with the JAMA study whilst the medical journal was investigating the controversy. The JAMA editors said that, in future, anyone complaining of an author failing to report a conflict of interest would “be specifically informed that he/she should not reveal this information to third parties or the media while an investigation is under way.” Here is Dr. Leo's response to the JAMA editorial.

Is the JAMA policy even possible to enforce? Does it serve the interests of innovation and the scientific process? Leaving aside the potential worries about free expression (both for the critic making the allegation, and for the journal publishing it), keep in mind that in the age of health 2.0, most critics of scientific research are not academics. They are patients and their families. In the days since this story emerged, my quick search on Google and online health blogs suggests that at least several dozen bloggers have echoed Dr. Leo’s concerns about conflict-of-interest in the original JAMA article. It can get tricky to try to discipline every research critic on the Web.

The time when editors knew best is passé. Whether or not the army of reader/critics on the Web is right or wrong, they cannot, and will not, be silenced. Transparency governs.

Ignore criticism at your peril

The JAMA controversy reminds me of another industry that failed to heed the transparency rule. When I worked in the newspaper business in the pre-Internet era, we had space for roughly 10 letters, yet 10-15 times that number flowed in by fax or letter every day.

Today, print newspapers are suffering heavy revenue declines (and in some cities, have disappeared altogether) because of not taking criticism and openness seriously. The venerable Rocky Mountain News is defunct. The Tribune Co., owner of the Los Angeles Times and the Chicago Tribune, has filed for bankruptcy. The Seattle Post-Intelligencer is now online only. And just two weeks ago, the San Diego Union-Tribune was sold to a private-equity firm.

Notably, mainstream newspapers such as the Wall Street Journal that were among the first to embrace aggressive reader criticism via blogs, early amid the ascendance of the Internet, are the only ones today that enjoy sustained readership and continued influence. For anyone in the information business, the new mantra is no longer “content is king”. It’s “transparency rules.”

The demise of mainstream newspapers should be a lesson to the titans of research and innovation. Heed the transparency rule: embrace openness or wither on the knowledge vine.

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Neil Seeman, a Longwoods essayist, is Director and Primary Investigator of the Health Strategy Innovation Cell, based at the University of Toronto’s Massey College. He is also an adjunct professor of health services management at Ryerson University and writes the “Second Opinion” health innovation column for the National Post. neil.seeman@utoronto.ca

Privacy has lost its “cool factor”…

Neil Seeman

According to the Talmud, there are two times you’re allowed to boast: when courting a potential spouse, or when looking for a job. In the current recession, many people are searching for a job, and so put their best résumé forward for everyone to see. Scanning the world of healthcare résumés posted freely on social networks such as Linkedin reveals a trend: privacy is out, “publicness” is hot.

As of the time of writing, Linkedin – the leading business professionals’ network online – included the résumés of 653 people working in the “hospital and healthcare sector” who described themselves as privacy professionals. More than twice as many (1,559) described themselves as patient advocates. The largest professionals’ discussion forum dealing with privacy had 867 members; the largest “health 2.0” discussion forum (of which there are many) had 4,888.

A limitation on my analysis: by definition, the very people who use Linkedin to look for employment or to connect with other professionals in their field – 35 million registered users and growing – are people who believe in what author Jeff Jarvis calls “publicness”.

Web 2.0 means social collaboration on the Web. Most “health 2.0” enthusiasts embrace “publicness.” “Publicness” is the new ethic of transparency in all things. Social networking sites such as Facebook, Linkedin, Twitter and MySpace trade off people’s growing willingness to disclose details about their personal lives, accomplishments…and their failures. Twitter, the fastest-growing Web phenomenon, is completely open source. Every entry is searchable on Google.

Contrary to popular myth, the ethic of publicness is much less about vanity than about a fundamental belief that “letting it all hang out” is a value system to be admired. This is part generational (so-called “Generation G”) and partly a function of our loss of faith in Wall Street and its culture of opaqueness. Even Swiss bankers are embracing publicness. Healthcare is not far behind. As the Wall Street Journal’s L. Gordon Crovitz has written, “a right to privacy seems to be transforming into a duty to disclose. We can know more, so we expect to know more.”

…it’s about control

Health 2.0 websites such as patientslikeme – which boasts a heavy contingent of Canadian users – allow members to share treatment and symptom information in real-time in order to monitor and to learn from real-world outcomes. As of March 2009, there were reportedly more than 11,000 users with multiple sclerosis, 8,000 with mood disorders, 3,500 with amyotrophic lateral sclerosis, 3,000 with Parkinson’s disease, and 2,000 users of the site with HIV.

As Jarvis writes in What Would Google Do?, “Privacy is not the issue. Control is. We need control of our personal information, whether it is made public and to whom, and how it is used.” Patients who “let it all hang out” on patientslikeme – name, age, location, symptoms – care more about controlling how their information gets used than about whether fellow sufferers can access it.

The same is true for job-seekers. In the old world, the perfect candidate for the CEO’s office – or for the entry-level position – was someone with an unblemished past. Today, the perfect candidate is someone who has disclosed his or her past missteps online. The superstar healthcare employees of today still boast about their accomplishments, but also about how they have learned from failure and humility.

Neil Seeman is Director and Primary Investigator of the Health Strategy Innovation Cell, based at Massey College at the University of Toronto.

DSM-Twitter: Are We Happy Or Sad Right Now?

Neil Seeman and Carlos Rizo

Sadness is a global phenomenon. It is also challenging to measure in a timely manner. Imagine if we could measure it in real-time and reach out to those in need with more immediacy. We think we can.

March 12, 2029 (CBC.ca) - Canada's happiness index has risen to the level of Denmark's for the first time in two decades, capping a five-year run on the back of booming demand for the nation's improvement in mental health. The Canadian happiness index rose as high as $1,000.800 smiley emoticons before dipping to 998.700 smiley emoticons at 4:16 p.m. on the New York exchange. It has soared 62 percent from a record low of 617.667 smiley emoticons in 2002. The Canadian happiness currency last closed above $1M on Nov. 25, 2008, when Stephen Harper was Canada's prime minister. In other news...

Researchers are accustomed to estimating the prevalence of mood disorders through surveys or through analysis of physician billing databases. The data are disquieting. In any given year, surveys suggest about 8% of Canadians will suffer clinical depression at some point in their lives. Other approaches to measuring prevalence rates include reviewing expert opinion and conducting epidemiological surveys.

Dr. Dan Bilsker and colleagues showed in a 2007 paper in the Canadian Journal of Psychiatry that the physician-treated prevalence of depression in British Columbia grew from 7.7% in 1991-1992 to 9.5% in 2000-2001. More than 95% were seen by family physicians, and in the final year, just 7.5% were seen by psychiatrists. In an alarming statistic just published in the same journal, Mel Slomp and colleagues in Alberta, using physician databases, report a 35% treated prevalence rate for mental disorder (mainly anxiety and depression) for adults seen over a three-year time period.

Introducing DSM-Twitter: A real-time happiness measure
There are roughly 8 million Twitter users, according to a February 2009 report by Compete.com. As the online encyclopedia Wikipedia explains, Twitter "enables its users to send and read other users' updates (known as tweets), which are text-based posts of up to 140 characters in length. Updates are displayed on the user's profile page and delivered to other users who have signed up to receive them."

We were curious as to what Twitter would reveal about the mental health of Canadians. The results are fascinating. So-called "tweets" are often accompanied by "emoticons". In Twitter, the emoticon :) or :-) means happy or joyful. The emoticon :( signifies sad. The double string, :) :), means very happy or :( :( means very sad.

Using our real-time analysis, there were 417 tweets - within 15 miles of Toronto - expressing sadness (or what Twitter calls a "negative attitude") during 17 minutes on March 12 (from 1:06pm EST to 1:23pm EST). During the very same time frame, there were 1,500 tweets from Toronto showing happiness or a "positive attitude." This suggests that the ratio of happy comments to sad comments in the Toronto area was 3.6 to 1.

Is DSM-Twitter "scientific"?
The scientific process is in flux - in large part because the dynamic data available on the Web are growing at a stunning pace. Admittedly, our approach is far from perfect. Among other things, expressions of sadness may result from Twitter service outages, downturns in the stock market, bad sports results, frustrating weather conditions, traffic, or even the playful use of the emoticons. Still, social networking and micro-blogging services such as Twitter are entirely public (to which users consent), increasingly rich - and free! - tools of analysis. This, while the old-world scientific method is under renewed attack because of alleged bias, plagiarism and even fraud, inadequate methodology, and the fraternity-esque culture of peer review. We feel that peer review, critique, replication and validation are essential to innovation. However, we do need to quicken the pace of inquiry in order to enrich our understanding of the fast-changing world.

New paths of investigation
In a 12-hour period on March 12, we found 260 Vancouver-area tweets (connecting from many gadgets, including cell phones and Blackberries) which demonstrated joy. Eighty Vancouver-region tweets expressed sadness during this same time.

It may be unsettling to know that we might be sadder than earlier survey findings indicate. Yet, at the same time, it is exciting that we may have a way of capturing mood trends in real time. With Twitter, we may even have a new device to help reach out directly to the people who are suffering right now. One tweet at a time. :)

About the Author
Neil Seeman is Director and Primary Investigator of the Health Strategy Innovation Cell, based at Massey College, University of Toronto. He is "the Thank you Twitterer" at twitter.com/neilseeman and writes on health innovation for Longwoods and the National Post. Carlos Rizo is the Innovation Cell's Chief Imagineer. He has a Twitter grade of 98/100 (twitter.com/carlosrizo).

Correspondence: neil.seeman@utoronto.ca

A Westjet Health Care System?

Steven Lewis

I fly a lot - too much actually; I am chagrined by my carbon footprint. Most of my flights are on Air Canada (AC), indisputably an international class, full-service airline. You can go pretty much anywhere in the world on AC or its Star Alliance partners. You can pick your fare, frills, seat, and class. I've been an Elite AC member for about 15 years, so I get to wait for my flights in swanky lounges with free food, booze, newspapers, magazines, and business centres. I get free flights from the Aeroplan miles I accumulate and an annual stack of upgrade certificates. I get a special number to call if I need to change a reservation or seek help. Cool, eh?

But I fly Westjet (WJ) whenever I can, and would happily abandon AC altogether if WJ decided to go after the Saskatoon-to-wherever (especially Toronto) business traveler markets. Why? What would lead me to turn my back on the airline that gives me all this stuff, and what accounts for the almost giddy affection for the one that doesn't? Here's my hypothesis: it's because Canada's airlines are akin to the health system we have (AC) and the health system we need (WJ). Here's how.

What do I need? Business class to Kuala Lumpur? Single malt scotch in the lounge? Special meal? AC can do it. WJ? No can do. AC is pretty good at tertiary air care; WJ is the primary care airline. Most travel needs are primary: a reasonably priced ticket, leave on time, decent legroom, a modern aircraft. My own travel life is, well, pedestrian: Calgary, Vancouver, Toronto, Ottawa, Winnipeg (quit smirking - I like Winnipeg). WJ gives me a Boeing 737 with good overhead luggage capacity and a quiet ride - every time, all the time. AC gives me cramped Bombardiers that force passengers to compete for comically little carry-on baggage room. Advantage: WJ for the basic journeys; AC for the continental transplant operation.

What happens when there's a problem? Planes break down and weather mocks schedules. The test of an airline is not when things are ticky-boo; it's when misery descends. AC appears to believe that keeping the passengers in the dark about why the flight is delayed is reassuring, and that parcelling out the delays in two hour increments is comforting. "The 2 o'clock flight that was to leave at 4 is now departing at 6. We can't tell you which gate." WJ makes it a point to tell you what's happening. Call AC with a problem and you almost feel the blame-the-passenger vibes as the agent leafs through the policy manual to confirm your non-entitlements. WJ seems to want to help. AC has done some nice things for me, but WJ has performed truly heroic feasts of creative problem-solving and in one case was generous beyond the call of duty. Advantage: WJ on both comportment and delivery.

Surprise, it's a service industry. Aviation is incredibly safe. Planes of equal size are pretty much interchangeable. The highway up there is the same for everyone and an airport is an airport. WJ offers no business class, no hot meals, no fancy lounges, no air miles of its own. It pursues advantage by other means: the attitude of its people and their capacity to solve problems. Their entire ethos is built around the customer. I used to think the "AC attitude" was the inevitable result of an aging workforce fatigued by the wear and tear of a zillion flights and alienated by repeated labour strife and restructuring. Likewise I was sure that the happy-faced, fun-loving, energetic WJ honeymoon would end.

Well, WJ is a decade old and still no sign of passive aggression; not all their employees are fresh-faced kids. AC actually tries, but there is too much ennui and complexity . Their own agents can't figure out their absurd aeroplan mileage redemption rules and its website produces some legendarily idiotic itineraries. Small wonder they can't reliably produce quality service in the crunch. Pleasantness and can-do are hard-wired into WJ's DNA: I once bought a ticket from a WJ baggage service agent. WJ gives you more while giving you less. It has chosen the right quality indicators. Advantage: WJ.

Simple, reliable, effective, pleasant: whether from an airline or from health care, that's what we need most of the time. And where simple won't cut it, more than ever we need reliable, effective, and pleasant. AC is besotted with complexity and covets the overseas, long-haul market segment. You can tell it doesn't really care about most domestic routes outside the big cities. Though they try their best, it's clear the employees have no great love for the corporation they work for.

AC is to air travel what our acute care-obsessed, high-tech-envy health care system is to health. It's great that we can find the cystic fibrosis gene and separate Siamese twins but not so good that chronic disease management is a national catastrophe. The vast majority of people don't need glitzy miracles; we need sound, evidence-based, timely, respectful, and well-communicated primary health care from a team dedicated to getting it right.

In the end it's about culture, that maddeningly elusive notion that signals what an organization or system is about. The truly successful put the customers first and pay attention to the workforce and the workplace. They get the fundamentals right and understand where their bread is buttered. WJ has mastered primary air care; it makes money where AC bleeds red ink. Health care, take a lesson.

Our Health Policy Contranyms

by Neil Seeman

Smiles, says the old joke, is the longest word in the English language, since there is a mile between the two s's. Whoever thought this up missed the health policy literature - with its long, deliberately obtuse abstractions.

I have worked as a lawyer (where "submit" means "say") and in the large corporate sector (where a "resource" is a "person"). But in health policy we see the increasing use of contranyms, words that contain opposing meanings. A non-health care example of a contranym is "to buckle," which can mean "to fasten" or "to wobble and break." Contranyms can result from what grammarians call polysemy, where one word morphs into different, and ultimately opposing, meanings.

Consider three leading contranyms in the health policy context. One meaning is the word as originally conceived in the dictionary; the other, opposite meaning, is how it has come to be applied in health policy discussions. In each case, there may be an unstated, but rational, method to this linguistic madness.

1. "Stakeholder" is generally used in the health policy lexicon to mean: "a person or organization with a legitimate interest in a given situation, action or enterprise." Since this definition of "stakeholder" is opposite to the original meaning of the word, "stakeholder" - "a person holding the stakes for others," i.e., a lackey - the word has become a contranym.

If we think about it, all Canadians should be "stakeholders" - equal, and equally legitimate - in all matters of health policy (in fact, our Canada Health Act mandates as much). We use the word "stakeholder" to limit, pragmatically, the numbers of individuals whose views we consider when planning policy: in so doing, do non-stakeholders (i.e., "fringe" players) thereby become lackeys?

2. Next time you're at a policy conference, count how many times you hear the word iterative. (Prior to this essay, there were over 100 separate references to the word in Longwoods publications). Its use seems to be growing. "Iterative development" - or common variants, "the next iteration," or "iterative process" - contain a contradiction. "Iterative" means recurring or repetitive, and, yet, "development" or "process" signify advancement. When we use any such phrases, we are unconsciously hedging our bets, insinuating that the "next iteration of the strategy" may veer sideways or even reverse course.

3. To "invest" in an initiative, as understood in the private sector, is to expect a financial return, or profit. And yet, in health policy, there are finite government resources. Policy choices require trade-offs, and a failure to consider trade-offs leads us into the trap of the open-ended fallacy, or what economists consider the failure to think clearly about a policy's knock-on effects. And so, every time you hear the word "invest," consider whether the "investment" is being used in its purist sense (to realistically expect a return) or whether the "investment" will necessarily cleave (itself a contranym) realizable gains from another policy.

To be sure, the US context offers more colourful context for oxymorons, notably "managed care." There may be something uniquely Canadian about the health policy contranym: a deliberate obfuscation of what we aim to say. We care about all stakeholders, but sometimes some stakeholders may be more important to us than others; policy forges ahead in iterative stages, since, perhaps, we are too risk averse to embrace the frontier of innovation; and we may talk a good game about investment, but we may be leery of appearing to endorse the language of profit.

This sort of linguistic muddle is a matter of custom. Is the "custom" a byproduct of "conventional behaviour" or "deliberate design"? That's a conundrum.

About the Author
Neil Seeman is Director and Primary Investigator of the Health Strategy Innovation Cell, based at Massey College, University of Toronto.