Dr. Edward Shortliffe, on the History and Future of Biomedical Informatics

Last week I had the opportunity to hear and meet Dr. Edward Shortliffe at the New York Academy of Medicine. He’s a maven in the field of biomedical informatics (that would be the “other” BMI), and a pioneer at that. He mentioned that he began working on an electronic health record (EHR) when he was an undergraduate at Harvard in 1968.

Shortliffe emphasized the multidisciplinary nature of the field – that clinicians and computer science-oriented types need be involved for health information technology (HIT) to be effective. “Human health is at the core of it,” he said. The goal of biomedical informatics isn’t for computers to replace humans, he said, but for doctors to learn how to use it – as a tool – so that we (human doctors) can practice better medicine.

He reviewed the 50-year history of the field. The super-simple summary goes something like this: in the 1960s hospitals developed early information systems; in the 1970s, early decision support and electronic health records (EHRs) emerged at hospitals and large institutions; in the 1980s clinical research trials led to databases involving patients across medical centers; in the 1990s, progress in science (especially genetics) led to modern biomedical informatics. Now, the vast work includes clinical, imaging, biology (molecular, genomic, proteomic data) and public health.

Clinical informatics is the newest field supported by the American Board of Medical Specialties.  The first boards will be offered in October of this year, he mentioned.

If you’re interested in the future of health IT, as I am, you might want to take a glance at a perspective published recently by Dr. Shortcliffe and two coauthors, Putting Health IT on the Path to Success, in JAMA. The authors consider the slow pace of implementing HIT, and suggest that the solution rests with patient-centric Health Record Banks (HRBs):

“…Health record banks are community organizations that put patients in charge of a comprehensive copy of all their personal, private health information, including both medical records and additional data that optionally may be added by the patient. The patient explicitly controls who may access which parts of the information in his or her individual account.

I’d like to see these emerge.

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What Does it Mean if Primary Care Doctors Get the Answers Wrong About Screening Stats?

Last week the Annals of Internal Medicine published a new report on how doctors (don’t) understand cancer screening stats. This unusual paper reveals that some primary care physicians – a majority of those who completed a survey – don’t really get the numbers on cancer incidence, 5-year survival and mortality.

An accompanying editorial by Dr. Virginia Moyer, a Professor of Pediatrics and current Chair of the USPSTF, drives two messages in her title, What We Don’t Know Can Hurt Our Patients: Physician Innumeracy and Overuse of Screening Tests. Dr. Moyer is right, to a point. Because if doctors who counsel patients on screening don’t know what they’re speaking of, they may provide misinformation and cause harm. But she overstates the study’s implications by emphasizing the “overuse of screening tests.”

The report shows, plainly and painfully, that too many doctors are confused and even ignorant of some statistical concepts. Nothing more, nothing less. The new findings have no bearing on whether or not cancer screening is cost-effective or life-saving.

What the study does suggest is that med school math requirements should be upped and rigorous, counter to the trend. And that we should do a better job educating students and reminding doctors about relevant concepts including lead-time bias, overdiagnosis and – as highlighted in two valuable blogs just yesterday, NPR Shots and Reporting on Health Antidote – the Number Needed to Treat, or NNT.

The Annals paper has yielded at least two unfortunate outcomes. One, which there’s no way to get around, is the clear admission of doctors’ confusion. In the long term, this may be a good thing, like admitting a medical error and then having QA improve as a consequence. But meanwhile some doctors at their office desks and lecterns don’t realize what they don’t know, and there’s no clear remedy in sight.

Dr. Moyer, in her editorial, writes that medical journal editors should carefully monitor reports to ensure that results aren’t likely misinterpreted. She says, in just one half-sentence, that medical educators should improve teaching on this topic. And then she directs the task of stats-ed to media and journalists, who, she advises, might follow the lead of the “watchdog” HealthNewsReview. I don’t see that as a solution, although I agree that journalists should know as much as possible about statistics and limits of data about which they report.

The main problem elucidated in this article is a failure in medical education. The cat’s out of the bag now. The WSJ Heath Blog covered the story. Most doctors are baffled, says Fox News. On its home page, the Dartmouth Institute for Health Policy & Clinical Practice links to a Reuters article that’s landed on the NIH/NLM-sponsored MedlinePlus (accessed 3/15/12). This embarrassment  further compromises individuals’ confidence in doctors they would and sometimes need rely on.

We lie, we cheat, we steal, we are confused… What else can doctors do wrong?

The second, and I think unnecessary, problematic outcome of this report is that it’s been used to argue against cancer screening. In the editorial Dr. Moyer indulges an ill-supported statement:

…several analyses have demonstrated that the vast majority of women with screen-detected breast cancer have not had their lives saved by screening, but rather have been diagnosed early with no change in outcome or have been overdiagnosed.

The problem of overdiagnosis, which comes up a lot in the paper, is over-emphasized, at least as it relates to breast cancer, colon cancer and some other tumors. I  have never seen a case of vanishing invasive breast cancer. In younger women, low-grade invasive tumors are relatively rare. So overdiagnosis isn’t applicable in BC, at least for women who are not elderly.

In the second paragraph Dr. Moyer outlines, in an unusual mode for the Annals, a cabal-like screening lobby:

 …powerful nonmedical forces may also lead to enthusiasm for screening, including financial interests from companies that make tests or testing equipment or sell products to treat the conditions diagnosed and more subtle financial pressures from the clinicians whose daily work is to diagnose or treat a condition. If fewer people are diagnosed with a disease, advocacy groups stand to lose contributions and academics who study the disease may lose funding. Politicians may wish to appear responsive to powerful special interests…

While she may be right, that there are some influential and self-serving interests and corporations who push aggressively, and maybe too aggressively for cancer screening, it may also be that some forms of cancer screening are indeed life-saving tools that should be valued by our society. I think, also, that she goes too far in insinuating that major advocacy groups push for screening because they stand to lose funding.

I’ve met many cancer agency workers, some founders, some full-time, paid and volunteer helpers – with varied priorities and goals – and I honestly believe that each and every one of those individuals hopes that the problem of cancer killing so many non-elderly individuals in our society will go away. It’s beyond reason to suggest there’s a hidden agenda at any of the major cancer agencies to “keep cancer going.” There are plenty of other worthy causes to which they might give their time and other resources, like education, to name one.

Which leads me back to the original paper, on doctors’ limited knowledge –

As I read the original paper the first time, I considered what would happen if you tested 412 practicing primary care physicians about hepatitis C screening, strains, and whether or not there’s a benefit to early detection and treatment of that common and sometimes pathologic virus, or about the use of aspirin in adults with high blood pressure and other risk factors for heart disease, or about the risks and benefits of drugs that lower cholesterol.

It seems highly unlikely that physicians’ uncertainty is limited to conceptual aspects of cancer screening stats. Knowing that, you’d have to wonder why the authors did this research, and why the editorial pushes so hard the message of over-screening.

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Confusing Reports On Coffee and Cancer, and What To Do About Breakfast

When I was a medical resident in the late 1980s, we treated some patients with pancreatic cancer on a regimen nick-named the coffee protocol because it included infusions of intravenous caffeine. How absurd, we thought back then, because years earlier caffeine had been linked to pancreatic cancer as a possible cause.

Now, two new studies suggest that coffee consumption reduces a woman’s risk for developing breast cancer, according to MedPage Today:

Women who drank at least five cups of coffee daily had a significantly lower risk of postmenopausal breast cancer, an analysis of two large cohort studies suggested.

…Coffee has a paradoxical relationship with breast cancer risk. The beverage’s complex mix of caffeine and polyphenols suggests a potential to confer both carcinogenic and chemopreventive characteristics, the authors noted…

I’m incredulous, still.

As with most compounds we ingest or otherwise absorb, it’s conceivable that caffeine could damage some cells or somehow factor into some tumors’ growth just as it might suppress others, and that the dose matters. The fact is that, like most dietary chemicals, we really don’t know much about its specific effects on any cancer type.

This morning, as usual, I had an early cup of joe with low-fat milk stirred in. I might have a second cup, or a cappuccino with skim milk and cinnamon, in the afternoon. And that’s about it.

When I’m not sure if something’s good or bad for me, or both, I take it in moderation, if at all, if I choose.

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Internet-Based Medical Information May Prove More Trustworthy Than Printed Texts

Today Ed Silverman of Pharmalot considers the case of a ghost-written medical text’s mysterious disappearance. The 1999 book, “Recognition and Treatment of Psychiatric Disorders: A Psychopharmacology Handbook for Primary Care,” (reviewed in a psychiatry journal here) came under scrutiny last fall when it became evident that the physician “authors” didn’t just receive money from a relevant drug maker, SmithKline Beecham; they received an outline and text for the book from pharmaceutical company-hired writers.

poster for the X-Files

The book is no longer evident at the website for STI (Scientific Therapeutic Information), the company that provided authorship “help.” I tried to get a copy on Amazon.com, where it’s said to be temporarily out-of-stock. The work remains listed in the Library of Congress on-line catalog: #99015420.

I’m reminded of clinical handbooks I used all the time when I was practicing hematology and oncology. At the hospital, I’d get freebie, small-sized chemo regimen primers that conveniently fit into my white coat pocket. In retrospect, perhaps I didn’t adequately check the authors’ credentials on those mini-book sources. It was too easy to take that information and keep it at hand, literally, especially in the times before we had constant Web access.

And I’m struck by how the Internet – that infinite bucket of once-lowly or at-best mixed-quality information doctors disparaged for years – may prove a better information source than printed books.

It’s a minor paradox, or a twist in trust –

Now, with a few clicks if you know where to look, you can get recommendations for chemo dosing from reliable sources, like the NIH or peer-reviewed journal articles. Although transparency about physicians’ ties to industry is not nearly yet where it should be, you can find out about more about an author’s connections and potential conflicts of interest than at any time in medical publishing history.

What we write here can’t be discarded, burned, or go out of print.

(And it may be corrected, readily, before the next edition.)

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Considering the Coverage of the Earthquake, Tsunami and Nuclear Reactor Breakdowns

Listening to and watching the news, last night and this morning, I’ve heard all kinds of stuff – mainly from reporters who don’t seem to know very much about physics or radiation. (Personal kudos to Anderson Cooper, who seems to have a broader command of the terms and handle on the situation than some of CNN’s designated experts.)

image via multiple sources, originally on NHK world news (link)

In general, my take on the English media coverage so far is that the New York Times is doing a good job with the physics and the unfolding events in themselves (with the exception of an irrelevant, essentially absurd three paragraphs in a strange piece with quotes from a former astronaut on why we should worry about asteroids hitting the earth that fell into the Sunday Week in Review; don’t know how that got through the editor’s non-panic button); Scientific American has some strong coverage on the matter; Slate has its streaming, distinct slant

Here in the U.S., yesterday (and perhaps earlier) some people started worrying how this might affect us, here. Some friends have asked me what I think they should do. Supposedly all companies that manufacture potassium iodide pills have sold out. I don’t offer public health advice here, and I won’t comment on the confusing and contradictory published recommendations and doses for potassium iodide which has, if anything, a limited potential to protect people from thyroid cancer.

The sites below are unfortunately limited in the information they provide, and outdated as I considered last weekend, but the sources are comparatively reliable:

Union of Concerned Scientists

U.S. Nuclear Regulatory Commission

CDC on Radiation Emergencies

EPA on What You Can Do

FEMA on Nuclear Power Plant Emergency

Radiation Effects Research Foundation (a joint project of the Japanese and U.S. Governments; hat tip to Merrill Goozner for cluing me into this agency’s existence)

The bottom line is that there’s no easy fix, or ready protection from most forms of radioactivity. My personal opinion is that the risks here are low, essentially negligible, and that the reason to watch all of this is to learn how we (in the big sense, including them) can build better, safer energy sources in the future.

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A Glimpse into the Cochrane Library

I’m taking notes on the Cochrane Library. The site – a collection of databases and reviews – drew my attention yesterday when an embargo was breached for an article to be published there having to do with zinc’s putative power to squelch the common cold.

From the website, published John Wiley & Sons, Ltd.: the Library is put forth by the Cochrane Collaboration, an international group established in 1993. This on-line set includes the Cochrane Database of Systematic Reviews, which so far has published over 4000 papers. The stated aim is to help people make well-informed decisions about human health.

Professor Archibald Leman Cochrane, a health care researcher and pioneering epidemiologist, was born in Scotland in 1909. He attended Cambridge and studied medicine in London. His work was interrupted, extensively. According to the Cochrane site, he served in the International Brigade in the Spanish Civil War and was a captain in the Royal Army Medical Corps during WWII. At one point he was taken as a POW, in Crete. Later on, after a stint studying tuberculosis in Philadelphia, among other endeavors, he became a full Professor at the Welsh National School of Medicine in Cardiff, Wales.

In some countries and Canadian provinces, the Cochrane Library is freely and fully available to anyone with Internet access, based on funding for the collaboration. Here in the U.S., you might view the complete database through a public or university library subscription.

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Internet Surpasses TV as Prime News Source for Young Adults

I must have been reading a magazine when Mashable reported on new findings about the news from the Pew Research Center. A December 2010 survey confirmed that Americans are turning away from newspapers and logging onto the Web. Among young people, the Internet exceeds TV as a news source:

In 2010, for the first time, the internet has surpassed television as the main source of national and international news for people younger than 30. Since 2007, the number of 18 to 29 year olds citing the internet as their main source has nearly doubled, from 34% to 65%. Over this period, the number of young people citing television as their main news source has dropped from 68% to 52%.

The survey, which involved asking 1500 adults in the U.S. about their main source of national and international news, was conducted by phone with land-line and cell phone connections. It follows from other Pew studies, which together reveal some other, interesting trends.

Radio news consumption has been relatively flat over the past decade. The proportion citing TV as their main sources declined in all age groups. However, among people with limited education, TV dominates:

College graduates are about as likely to get most of their national and international news from the internet (51%) as television (54%). Those with some college are just as likely as college grads to cite the internet as their main source (51%), while 63% cite television. By contrast, just 29% of those with no more than a high school education cite the display internet while more than twice as many (75%) cite television.

Pew Research Center for the People & the Press, findings on Americans' news sources, Jan 4, 2011

You can visit the Pew Research Center for the People & the Press analysis for more graphs and information.

As for health care implications – I can only speculate on these trends’ significance and how doctors’ input might shift these curves, or not.

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Word of the Week: floccinaucinihilipilificationism

ML learned a new word upon reading the newspaper: floccinaucinihilipilificationism. According to the New York Times now, the late Senator Patrick Moynihan prided himself on coining the 32-letter mouthful, by which he meant “the futility of making estimates on the accuracy of public data.”

Some brief history:

Sometime around 1981, Moynihan invented the word by adding “ism” to an older, 29-letter English word, floccinaucinihilipilification – defined as “the action or habit as estimating as worthless” in a 1971 edition of the Oxford English Dictionary:

from the Oxford English Dictionary (1971)

You can find an open discussion of the roots of floccinaucinihilipilificationism on Wiktionary, which includes hard-to-decipher, clickable audiofiles – just in case you want to try saying the word out loud. Moynihan used the word in the title of his 1981 New Yorker review of a book by economist John Kenneth Galbraith.

More accessible is a somewhat dull, but worth-a-listen clip of the Moynihan discussing the word’s history in a debate on the budget deficit in July, 1999, on C-SPAN. From the Congressional Record:

“Floccinaucinihilipilification is now the second longest word in the Oxford Dictionary. It is from a debate in the House of Commons in the 18th century meaning the futility of budgets. They never come out straight…I added “ism” to refer to the institutional nature of this, so it became floccinaucinihilipilificationism. It is no joke. One never gets it right. It is not because one cannot, one does not try…

It seems to me the term, which was intended for the realm of economics, and projections in that, might bear also on the intricacies of vast amounts of data in science and health, data mining, and understanding the limitations of medical studies and related analyses. But I’m extrapolating here, for sure.

As I read the late Senator’s words, about his word, it seems maybe he’s suggesting that we could “get it right,” i.e. sort out data in a way that has real value, if we try harder to do so.

But who knows?

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On Patient Empowerment and Autonomy

Yesterday a Tweet crossed my screen that got me thinking. The source of was Gilles Frydman, founder of ACOR (Association of Cancer Online Resources) and a pioneer in the e-patient community:

@gfry: Participatory Medicine evangelists say “Engaged, empowered patients are better, healthier patients.” Where is the evidence?

What makes this question so ripe, in my oncologist-patient-teacher-blogger’s way of thinking, is that we may never, even if formal studies do provide data on this issue 10 years ahead, reach an objective conclusion on this matter.

The problem is this: To prove that empowered patients are “better and healthier,” how would we design a trial? If we were to compare those engaged – who almost by definition are more educated or at least have Internet access, or who are one way or another are linked to people who can help them find needed information – they’d likely do better than the disconnected patients. But the outcome might be a function of confounding variables: their education, economic status, on-line connectivity, etc.

I think the answer is inherent in the goal of being engaged, and this has to do with the concept of patient autonomy – what’s essentially the capacity of a person to live and make decisions according to one’s own set of knowledge, goals and values.

Autonomy in medicine, which borders on the empowerment idea, can be an aim in itself, and therefore valuable regardless of any measured outcome. For autonomy, or patient empowerment, to be meaningful and maybe even “better” in the strictly medical sense, as measured by outcomes like survival or quality of life, there needs be stronger public education in the U.S. and everywhere.

You can read all you want on stem cells, gene therapy or rare forms of chronic leukemia that are driven by a turned-on oncogene, but if you don’t know the basics of science and math, or don’t have sufficient language skills to read and absorb new knowledge or at least ask pertinent questions, it’s easy to get lost in that information, overwhelmed or – worse – suckered by those who’d try to persuade you of something that’s not true, cloaked in pseudoscience, that’s abundant and available on-line and, occasionally, in some doctors’ offices.

This is why public education matters, so much.


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Uncertainty Rules (on Eyjafjallajokull, volatility and a patient’s prognosis)

(on Eyjafjallajokull, volatility and a patient’s prognosis)

Eyjafjallajökull, April 2010 (Wikimedia Commons, attr: David Karnå)

As pretty much anyone traveling in Europe this week can tell you, it’s sometimes hard to know what happens after an unusual, disruptive event. Volcanologists – the people most expert in this sort of matter – can’t say for sure what the spitfire at Eyjafjallajokull will do next.

It comes down to this: the volcano’s eruption could get better or it could get worse. Or it might fluctuate for a while. If the situation persists, there’s no telling if its course will stutter, like seizures of varying intensity in a person with untreated epilepsy, or if it will flare sporadically like disease exacerbations in patients with MS and then, with some luck, peter out.

Some wonder if the ash might spread westward over the ocean, affecting distant cities like New York and Chicago. Unlikely, it seems to me, but this is far afield from my area of expertise.

What I do know is oncology, and so how I’m thinking about Eyjafjallajokull in medical terms – I want to know the prognosis: how bad and extensive will be the damage, how much will it cost, and in a few weeks or (please, volcanologist, don’t say it could be months) from now, how we can know for sure when the situation has cleared.

Aside from a few pulmonologists who rushed in to say there’s not much to worry about the silica-laden aerosolized dust particles, most scientists who’ve been interviewed have been cautious. I admire their candidness about what they don’t know.

For example, yesterday NPR’s All Things Considered offered this assessment:

“The volcanic eruption that has grounded planes and closed airports throughout Europe appears to be slowing down. But before travelers start rejoicing, Icelandic scientists have a warning: The eruption could start up again any time.

The website of the American Geophysical Union offers some explanations provided by Dr. John Eichelberger, Volcano Hazards Program Coordinator at the U.S. Geological Survey who, it happens, was grounded in Europe after attending a scientific conference:

“Although we’re pretty good at saying when an eruption will start, we’re not so good at saying when it’s going to end. You go mainly on the basis of history, what the volcano has done before. In the case of this volcano, the last time it erupted it was active for over a year. The other factor is how the wind is blowing…

Today, the BBC published several scientists’ opinions including these differing views:

Dr John Murray, an Earth scientist from the Open University in Milton Keynes, said that the ash had “significantly diminished” and the ice over the crater itself had melted…”This is the stage we have been waiting for: the steam explosions due to water being trapped within the erupting lava will have virtually ceased, and the activity has changed to lava outpouring,” he said. …Ash may resume at any time, but it is likely to be less pronounced and prolonged than before.”

But Dr Sue Loughlin from the British Geological Survey pointed out that a decrease in the volcano’s activity might not mean the end of the eruption all together. “There’s seismic activity ongoing, which means the eruption is ongoing…

You get the idea, a volcano in Iceland exploded for the second time in two months, putting much of Europe at a stand-still. Business travelers, vacationers, and companies had to stop and make new arrangements and even compromises. Disappointment and frustration ensued, besides some anger toward those whose job it is to decide if it’s safe to fly.

Going back to medicine – I’m thinking of a patient I once cared for with a non-Hodgkin’s lymphoma. When her disease struck, she was a young mother like me who led a complicated life with lots of responsibilities.

The type of lymphoma she had was uncommon; she sought multiple expert opinions regarding her exact diagnosis and treatment. My colleagues and I didn’t all agree about chemotherapy and radiation, and she was uncertain of how to proceed. Ultimately she opted for surgery and six months of chemotherapy. At the end of all that, she wanted to know if the lymphoma would come back.

“We can never be sure,” I told her. There’s really no choice but to watch and wait.

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When ‘No’ Turns Positive in Medical Care and Education

The medical word of the month is a most definite “no.”

The word is featured, explicitly and/or conceptually, in recent opinions published in two of the world’s most established media platforms – the New York Times and the New England Journal of Medicine. The combined message relates to a previous point I’ve made here and elsewhere, that if doctors would or could take the time to provide full and unbiased information to their patients, people might choose less care of their own good sense and free will.

Let’s start with David Leonhardt’s April 7 column, In Medicine, The Power of No. In this excellent essay he defines the difficulty: “deep down, Americans tend to believe that more care is better care.” Then he details the problem:

…It’s not just CT scans. Caesarean births have become more common, with little benefit to babies and significant burden to mothers. Men who would never have died from prostate cancer have been treated for it and left incontinent or impotent. Cardiac stenting and bypasses, with all their side effects, have become popular partly because people believe they reduce heart attacks…

Advocates for less intensive medicine have been too timid about all this. They often come across as bean counters…

After outlining the situation – too much and sometimes harmful medical care, combined with a population reticent in limiting any form of consumption – he offers three steps by which we might “learn to say no.” Those would include:

1. Learning about when treatments work and when they don’t. (This is problematic, he admits, citing the Institute of Medicine which reports that too often data are “incomplete or unavailable.”)

2. Giving patients the available facts about treatments. (This doesn’t happen as it should, he explains, for reasons including doctors’ persistent paternalism.)

3. Changing the economics of medicine, to reward better care rather than simply more care.

So, as I understand Leonhardt’s proposal, he’s saying that if we knew more, we’d be less demanding and ultimately more satisfied with the medical care we receive. And because more care is sometimes harmful, besides expensive, the consequence of saying “no” would be a big plus – in terms of quality and costs.

Moving on –

On April 8 the New England Journal of Medicine published a perspective piece, Cost Consciousness in Patient Care – What is Medical Education’s Responsibility? by Dr. Molly Cooke. This essay parallels Leonhardt’s in that it first reviews our medical overconsumption problem and then suggests specific steps to ameliorate it.

A major distinction is that Cooke addresses physicians and her proposal applies, for the most part, to their medical education. She considers that, at least historically, doctors are not trained to consider costs in the process of rendering medical decisions. The primary concern, we’re taught, is doing what’s right for our patients. The second, it seems, is an ivory-tower sort of wisdom:

…Academia celebrates the “high knowledge” of medicine: pathophysiology, molecular biology, genomics. Even evidence-based medicine, although it deemphasizes fundamental mechanisms, is regarded as acceptably intellectual in comparison with “low,” real-world concerns such as cost…

After mentioning physicians’ conflicting financial incentives in practice and many doctors’ hesitation to speak about or even consciously consider costs, she proposes three changes in medical training. In her terms:

1. We must be honest about the choices that we make every day. (What she intends here, as I read it, is that because physicians do indeed ration our time and other resources, we should be up-front, i.e. conscious about such value-laden decisions.)

2. We must prepare every physician to asses not only the benefit or effectiveness of diagnostic tests, treatments, and strategies, but also their value.

3. We must broaden our programs so that all trainees receive a foundation of exposure to health care management and health services delivery. (That we can afford for doctors-in-training to spend more of their time on the business of health care, I’m not convinced, but her point is that at least they should have a clue about how the real world of health care works and how much things cost.)

What Cooke says, in sum, is that for physicians to effectively counter the unsustainable medical expenses in the U.S., we should adjust medical education to train doctors to think – actively and consciously – about the economics of health care.

Now it’s easy to tie these two pieces together. The points are that regular citizens and doctors, both, need to learn more about the value of tests, procedures, treatments and other health care commodities. Just piling it all on blindly doesn’t yield the most value.

I’m reminded, lately, of a simple fact about numbers I knew in high school, that when you put together two negative numbers by multiplying them, you get a positive. Maybe, in the real, messy, complicated world of medicine and health care delivery, we can entangle these two learned no’s – patients choosing less and doctors recommending less – and get a bona fide, positive outcome

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Nice Nerds Needed

In last weekend’s edition of NPR’s Wait Wait…Don’t Tell Me!, host Peter Sagal asked a panelist about a serious problem facing the Pentagon: There’s a shortage of nerds, a.k.a. geeks.

Space Shuttle Atlantis (NASA image, Wikimedia Commons)

Happily, Houston Chronicle deputy editor and blogger Kyrie O’Connor came to the right answer.

On the quiz show, Sagal reported that Regina Dugan, head of DARPA (the Pentagon’s research arm and developer of the early Internet), recently testified before the House Armed Services Committee about her concern for our country’s most famous five-sided structure’s looming intellectual deficit.

“The decline in science education in this country means fewer nerds are being produced, a fact which has serious national security implications,” Sagal said in summary.

“Nerds molt into tech geeks. Tech geeks grow into scientists and scientists maintain the United States technical superiority,” he explained. No worries, though –

Sagal suggests the current nerd shortage will self-correct based on the predictable laws of high-school ecosystems. (To listen to his short description of this evolutionary process, check the track for Panel Round 2, after minute 4:48.)

Wired covered, earlier, the same story on DARPA’s looming technogeek shortage and Dugan’s forward-thinking statement on the matter:

…outlined her vision for the future of the Pentagon’s blue-sky research arm, with everything from plant-based vaccines to biomimetics making the short list. But none of it’s possible, she told the panel, without more investment in American universities and industry to cultivate the techies of the future…

So we lack sufficient math and science education to support the Pentagon’s needs for cutting-edge technology. And we all know that American businesses are losing out for the same reasons.

My concern is health, that some turned-on science and math-oriented kids should grow up and become physician-scientists or even plain-old, well-trained doctors who are good at interpreting graphs and applying detailed, technical information to patients with complex medical conditions. Last week I wrote that better education would improve health and medical care delivery in the U.S. This seems like an obvious point, but the more common discussion strikes on the need for math and science education to support hard technology in industry.

We’re facing a shortage of primary care physicians, oncologists and other doctor-types. Lots of clever and curious young people are turning away from medicine. The hours are too long, the pay’s too low, and the pressure is too great. If we want doctors who know what they’re doing, we should invest in their education and training, starting early on and pushing well past their graduation from med school.

Sure, we like physicians who are kind and honest people and can talk to them in ways they understand. This is crucial, but only to a point – we still depend on doctors to know their stuff.

I like doctors who are nice nerds. We need more of those, too.

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Ten Ways to Better Our Health (Magazine Cover Style)

If patients knew more:

1. they’d understand more of what doctors say;

2. they’d ask better questions;

3. they’d be more autonomous;

4. they’d make better decisions (ones they’re comfortable with, long-term);

5. they’d spend less money on care they don’t want or need.

If doctors knew more:

1. they’d provide more effective treatments;

2. they’d waste less money;

3. they’d make people feel better;

4. they wouldn’t feel threatened by informed patients;

5. they’d garner more respect.


Looking over this, I realize that doctors might be persuaded by the same list presented in the style of a PowerPoint presentation. Either way’s OK with me.

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News, Information, Facts and Fiction

This morning I was in the gym, half-watching CNN as I did my usual exercises. Mathew Chance, a senior international correspondent based in Moscow, recapped the horrific scene involving explosions at two metro stations at the peak of rush hour. Chance reported that the bombers were both women. Most of the other facts surrounding the tragedy remain uncertain, he said. John Roberts, one of the CNN hosts, asked about any claims of responsibility for the terrorist attacks.

“Well, in fact, we had some information earlier today,” Chance responded. “…there had been a claim of responsibility…But that information appears to be incorrect.”

Wow!  Now, there’s an AM Fix.

Can information be wrong? Of course it can, we all know. There’s good evidence for this in my medical textbooks, among other reliable sources.

Lately, and especially since I started this blog, I’ve been thinking a lot about the nature of information – how we define it, how and if it might be distinguished from data, and what separates information and opinion.

“Information is the lifeblood of modern medicine,” wrote Dr. David Blumenthal in a carefully-designated “perspective” piece in the February 4 issue of the New England Journal of Medicine. He continued:

Health information technology (HIT) is destined to be its circulatory system. Without that system, neither individual physicians nor health care institutions can perform at their best or deliver the highest-quality care, any more than an Olympian could excel with a failing heart…

OK, so information needs to get around. It’s kind-of like blood; we can’t thrive without it. We won’t win any gold medals in health-care delivery before implementing the Health Information Technology for Economic and Clinical Health (HITECH) Act.

I agree on the essentialness of information in medical practice and decision-making. But that brings us back to the crucial issue of its nature – how people, doctors, scientists, news reporters or anyone, literate or otherwise, can tell if something’s true or untrue.

Last year in journalism school at Columbia University I took a course called “Evidence and Inference.” We went as far back as Plato’s cave, and as far forward as the New York Times’ 2002 reporting on possible evidence for weapons of mass destruction in Iraq. The point of the exercise, in sum, was that it’s sometimes hard, even for inquisitive journalists, scholars and scientists, to tell fact from fiction.

(Rest assured, I didn’t need a graduate course at Columbia to learn that much, although I did enjoy going back to school.)

Last week’s cover story in the Economist, on “Spin, Science and Climate Change,” drew my attention to some parallels between the Climategate controversy and distrust regarding other areas of scientific and medical knowledge. In a briefing within, the author or authors write:

…In any complex scientific picture of the world there will be gaps, misperceptions and mistakes. Whether your impression is dominated by the whole or the holes will depend on your attitude to the project at hand. You might say that some see a jigsaw where others see a house of cards. Jigsaw types have in mind an overall picture and are open to bits being taken out, moved around or abandoned should they not fit. Those who see houses of cards think that if any piece is removed, the whole lot falls down. When it comes to climate, academic scientists are jigsaw types, dissenters from their view house-of-cards-ists.

The authors go on to consider some ramifications of a consensus effect. (There’s an interesting discussion on this, which relates to a herding effect, in a recent post by Respectful Insolence).  Meanwhile, house-of-card-ists, dubbed doubters, emphasize errors from confirmational bias, or the tendency of some people to select evidence that agrees with their outlook.

There’s far more to consider on this subject – how we perceive and represent information – than I might possibly include in today’s post. So let’s just call this the start of a long conversation.

Getting back to medical lessons – the problem is that most of us can’t possibly know what’s really right. (Yes, I mean doctors too.) Few know enough of the relevant and current facts, or even the necessary terms, to make decisions about, say, which therapy is best for Ewing’s sarcoma in a four-year-old child or whether a new drug for Parkinson’s is worth a try in your dad’s case. Even for those of us who know something about statistics, it’s tricky.

Ultimately, I think it comes down to a matter of trust in the people who provide us information. It’s about knowing your source, whether that’s Deep Throat, a person reporting from the street in Moscow early this morning, or your personal physician.

Well, it’s a holiday for me over the next few days. I’ll read some history first, and then some fiction.

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A New Nurse Jackie in Preview

Nurse Jackie’s back on TV tonight. I know this because when I logged on to the New York Times this morning her ad flashed right at me, front page and right center. She’s displayed prominently on Huff Po, vanishingly on Dictionary.com. With just a quick search I can’t find her anywhere in the Wall Street Journal. At the LA Times she takes over the screen.

Poster for Nurse Jackie, Season 2

(As an aside, on the shifting nature of medical information, most future readers of this post will not know for sure if what I’ve described about the present on-line positioning of these commercials for TV is true. The same happens in practicing medicine, when clear signs of disease – like abnormal crackles on a lung exam – can be fleeting, leaving no digital or even a film imprint, yet very real. So you’ll have to trust me, or take no value from this depiction.)

For the “facts” on Nurse Jackie you can find her on Showtime’s original website. There, the program promises to continue “its look deep inside the complicated heart and soul of a functioning addict, a loving wife, mother, and a first-class nurse.” I’m curious but must admit that last year I watched only part of one episode and didn’t return.

Back then I was turned off preemptively by the image of Edie Falco looking harsh, white-coated and unsmiling. The syringe and needle in her raised, gloved hand suggested a third finger, or at least that’s how it seemed as we drove past her image, repeatedly, on a giant billboard. That poster was enough for me. I’d spent too much time in hospitals in trust of innumerable nurses to want to see that side of health care delivery.

Also, I liked Edie as Carmela Soprano so much, then fresh in my memory. Why ruin it?

But today she beckons, half-smiling, an aura of pills and syringes above her head. Maybe she’s happy about the health care reform bill’s passage last night, but I don’t think she could have known about that when the photo was taken, or in her TV unreality world, that legislation matters. What’s clear is that Nurse Jackie looks warmer, tired maybe from her work. She’s appears ready to help someone, a stethoscope slung over her neck. Her right arm is raised, like in last year’s pose, but gentler, calmer. It’s no accident the poster heralds a “Holy Shift.”

Back to reality –

This morning I was listening to WNYC while reading the newspaper and eating my healthy breakfast. As I recall, according to a reporter assigned to assess the public’s and health care workers’ response to the health care reform bill among people on the street near Lenox Hill Hospital, in my neighborhood, one individual said she doesn’t really know what to expect from the changes because she gets most of her news from TV. I didn’t catch any more details – if she meant CNN, for example, or Fox or The View – and exactly how and why she found the source limiting.

One thing I did note in the Times, and also on the Kaiser Health News website, both of which provide excellent summaries of the hopefully-real health care changes to come, is that reform won’t even start to happen for the most part until 2014. Meanwhile grows an authentic addiction to the Internet, TV, radio and even some blurry advertisements for information on medicine that people can’t or don’t get elsewhere.

So I’m thinking I should watch Nurse Jackie tonight. Give it another try. Maybe I’ll learn something. And whatever did happen to the House of God?

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Peter Sings Colonoscopy

Hi Readers,

This new form of medical information outreach outweighed any other contenders for today’s post:

“When I had my colonoscopy I had a question on my mind.

Do we all look the same when the doctor sees us from behind?

Then I had the answer…

Peter Yarrow, starting The Colonoscopy Song

Am I pro- or con- colonoscopy for routine screening, you might wonder. Well, that depends.

Am I pro- or con- famous singers and other celebrities extolling the benefits of particular medical interventions? Well, that depends, too.

But I’m sure I prefer “Puff the Magic Dragon.” Also “Leaving on a Jet Plane” fills me with imperfect memories of 6th grade. (I don’t know much about the history of this song, but there is an older, grainier and harder-to-hear version on YouTube dating to March, 2008.)

Thanks Peter, for this unique verbalization of what some doctors might otherwise convey. Glad to see you singing, aging, smiling about something.

The CDC confirms that March is national colorectal cancer awareness month (NCCAM).

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A Small Study Offers Insight On Breast Cancer Patients’ Capacity and Eagerness to Participate in Medical Decisions

Last week the journal Cancer published a small but noteworthy report on women’s experiences with a relatively new breast cancer decision tool called Oncotype DX. This lab-based technology, which has not received FDA approval, takes a piece of a woman’s tumor and, by measuring expression of 21 genes within, estimates the likelihood, or risk, that her tumor will recur.

As things stand, women who receive a breast cancer diagnosis face difficult decisions regarding the extent of surgery they should undergo (see the New York Timesarticle of last week, with over 200 people weighing in on this ultra-sensitive matter). Once the surgeon has removed the tumor, choices about chemotherapy, hormone modifiers, radiation and other possible treatments challenge even the most informed patients among us.

Oncotype DX and similar techniques, like the FDA-approved Mammaprint, provide a more detailed molecular profile of a malignancy than what’s provided by conventional pathology labs. For women who have early-stage (non-metastatic), estrogen-receptor positive (ER+) breast cancer, this test provides risk-assessment that’s personalized, based on gene expression in the individual’s tumor.

Oncotype DX has been commercially available since 2004. The test “reads” three levels of risk for breast cancer recurrence at 10 years: “low” if the predicted recurrence rate is 11% or less, “intermediate” if the estimated rate falls between 12% and 21%, and high if the risk for recurrence is greater than 21%.

The investigators, based at the University of North Carolina, Chapel Hill, identified women eligible for the study who had an ER+, Stage I or II breast cancer removed and tested with the Oncotype Dx tool between 2004 and 2009. The researchers sent surveys to 104 women, of whom 78 completed the questionnaires and 77 could be evaluated for the study. They distributed the surveys between December, 2008 and May, 2009.

Several factors limit the study results including the small number of participants and  that the women were treated at just one medical center (where the oncologists were, presumably, familiar with Oncotype Dx). The patients were predominantly Caucasian, the majority had a college degree and most were financially secure (over 60% had a household income of greater than $60,000). Nonetheless, the report is interesting and, if confirmed by additional and larger studies involving other complex test results  in cancer treatment decisions, has potentially broad implications for communication between cancer patients and their oncologists.

Some highlights of the findings:

1. The overwhelming majority of women (97% of the survey respondents) recalled receiving information about the Oncotype Dx test from their oncologists. Two-thirds (67%) of those women reported they “understood a large amount or all” of what the doctors told them about their recurrence risk based on the test results.

2. Nearly all of the respondents (96%) said they would undergo the test if they had to decide again, and 95% would recommend the test to other women in the same situation.

3. Over three-quarters, 76% “found the test useful” because it determined whether there was a high chance their cancer would come back.

4. The majority of respondents (71%) accurately recalled their recurrence risk, indicating a number within 4% of that indicated by their personal test results.

Taken together, these findings support that a majority of women with breast cancer whose oncologists shared with them these genomic testing results, and who filled out the surveys, had good or excellent recall of the Oncotype Dx reports and felt that the test was helpful.

As an aside, the women were asked to rate their preferences regarding their personal input in medical decisions. Among the 77 respondents, 38% indicated they prefer to have an active role in medical decisions (meaning that they prefer to make their own decisions regardless of the doctor’s opinion or after “seriously considering” the doctor’s opinion) and 49% indicated they like a shared role, together with their doctors, in medical decisions. Only 13% of the women said they “prefer to leave the decision to <the> doctor.”

What’s striking is that among these women with early-stage breast cancer, 85% said they like to be involved in medical decisions. And 96% said they’d undergo the test again. Most of the women, despite imperfect if not frankly limited numeracy and literacy (as detailed in the publication) felt they understood the gist of what their doctors had told them, and indeed correctly answered questions about the likelihood of their tumor’s recurrence.

The results are encouraging, overall, about women’s eagerness to participate in medical decisions, and their capacity to benefit from information derived from complex, molecular tests.

*The capacity of Oncotype Dx to accurately assess the risk of breast cancer recurrence has been evaluated in previous, published studies including a 2004 publication in The New England Journal of Medicine and a 2006 paper in the Journal of Clinical Oncology. The test is manufactured, run and marketed by Genomic Health, based in Redwood City, California.

The National Cancer Institute lists an ongoing trial for women with hormone receptor-positive, node-positive breast cancer that includes evaluation with the Oncotype Dx tool.

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MedlinePlus, Now More Than Ever

Last week, ABC announced drastic cuts for its newsroom staff. The situation is similar at CBS, which in early February reduced its news-gathering personnel. These pull-backs by the major networks, paralleled by lessening or flat-out elimination of newspapers, will boost the number of people who check the Internet for medical news.

Two recent studies, from the Pew Center’s Internet & American Life Project and the CDC’s National Center for Health Statistics, confirm that most Americans are going on-line for health information. Compounding this effect, in all likelihood, are the uninsured, those reluctant to fork out hefty co-pays and some who are unable to dole out a deductible before they see a doctor.

Bottom line: the role of Internet-based health resources is likely to expand over the next decade. We need to know what’s out there –

We should start with MedlinePlus, a virtual superstore of free medical information. Co-sponsored by the National Library of Medicine (NLM) and the National Institutes of Health (NIH), this site is comprehensive and relatively clear of commercial bias. (There are significant exceptions, see below). It’s a useful origin for most any health-related search.

MedlinePlus covers more than 800 topics in English, 500 in Spanish and selective information in over 45 languages – you can read about anemia in Bosnian, hand hygiene in Creole or viral hepatitis in the Hmong language.

The site includes a medical dictionary, an encyclopedia (provided by A.D.A.M., a health education company that’s traded on the NASDAQ, ADAM), a compendium of drugs, supplements and herbs (put forth by the American Society of Health-System Pharmacists), a database on herbal remedies from Natural Standard, and some 165 interactive health tutorials.

There’s a direct link to the original on-line database that doctors used for decades, Medline/PubMed. This professional reference encompasses over 16 million articles published in more than 5000 scientific and medical journals. For the most part it’s a well-organized list of titles and abstracts, or summaries, of biomedical papers. A growing proportion of the articles are available in their entirety, and the abstracts can sometimes provide helpful clues in a medical search.

Another key connection is to ClinicalTrials.gov, an NIH-sponsored registry of all federally-sponsored and many privately-funded clinical trials conducted in the United States and elsewhere. For cancer patients, this database is crucial; previously, only doctors searching for clinical trials could access a public database of experimental treatments. (I’ll cover this site in a separate, future post.)

MedlinePlus offers an extensive catalogue of surgical procedure videos. You can watch an abdominal hysterectomy, vasectomy reversal or open heart surgery if you choose. While the films can be helpful, perhaps, to some patients who are deliberating about a procedure, some of my non-physician friends have found them rather bloody. I have some reservations about this component of the MedlinePlus site, in that many of the videos are provided by community medical centers and, the films are provided by a commercial enterprise, ORlive.

In recent years the number of visitors to MedlinePlus has hovered over 10 million per month. In 2009, the site received hits from approximately 128 million distinct Web addresses.

Last year, I spoke with Robert Logan, Ph.D., of the Office of Communications at the National Library of Medicine. “We’ve hit some sort of tipping point,” he said. “The internet has eclipsed other health information sources.”

Despite the comprehensiveness of MedlinePlus, there’s work to be done, said Logan. Some particular areas he hopes to improve on include ethics, epidemiology and statistics. “It’s hard for people to look at numbers and make clinical decisions,” he said. “But that’s a serious weakness in all areas of medicine all over the world.”

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Are Doctors Necessary?

Ten years ago, my colleagues and I squirmed in our swivel chairs when a few tech-savvy patients filed in bearing reams of articles they’d discovered, downloaded and printed for our perusal. Some of us accepted these informational “gifts” warily, half-curious about what was out there and half-loathing the prospect of more reading. Quite a few complained about the changing informational dynamic between patients and their physicians, threatened by a perceived and perhaps real loss of control.

How a decade can make a difference.

In 2000 the Pew Charitable Trusts initiated the “Internet & American Life Project” to explore how the Web affects families and communities in matters of daily life. Susannah Fox is an associate director of the Research Center project.

“It’s the ultimate information appliance” she says of the Internet. Now that it’s in most people’s homes, people use it as they choose.

And that’s quite often –

In 2008 over 140 million Americans, a majority of U.S. adults, looked for health information on-line, according to the Center’s 2009 report. Nearly 60 percent of those admit that a recent Internet search influenced a medical decision.

“Back in 2000, our data was used to prove the concept that people were going on-line to get heath care information,” she says. But that’s no longer the issue.

“With Facebook, MySpace and Twitter, there’s a new frontier” she states. “I think we’re at a new inflection point, and now is the time to have a very clear conversation on health care.

There’s been a significant shift on the physicians’ side, too.

“It’s become clear that increased communication and discussion can change care in a positive way” says Dr. Barron Lerner, a primary care physician and medical historian at Columbia University. His most recent book, When Illness Goes Public: Celebrity Patients and How We Look at Medicine, considers how ailments in the public realm can influence peoples’ perception of illness and inform their care choices.

“The Internet can be amazingly good to get people up and running” he considers. Lerner encourages his patients who have cancer to visit the National Cancer Institute (NCI) website.

“Why not go on, and explore,” he tells them. “Now as for how much they can absorb there, I don’t know,” he adds. “It’s a very hard website.”

Dr. Gretchen Berland is a primary care physician, videographer and former MacArthur Foundation fellow at the Yale University School of Medicine. She led an early study on the quality and accessibility of web-based medical information in that was published in the Journal of the American Medical Association in 2001.

“The Internet gives people a sense of control,” she says. “People use the Web to augment the information they’re given by their physicians, to look for a second opinion, and to search for clinical trials.”

But despite the wealth of information, and good quality of many sites, Berland sees limits in the Internet’s use, particularly for patients with complex, serious conditions like cancer. Even if online materials are comprehensive and accurate, they rely on people’s ability to find and understand them.

The Internet is not enough to help most people, she states.

Recently Berland searched on-line resources on behalf of a friend who had cancer surgery. When she looked at all the data, including material gleaned from some physician-oriented sites, there were gaps. “It wasn’t clear what he should do, despite how much information is out there.”

That’s the paradox of the Internet, she notes. “It’s hard to know what applies to a particular person’s unique and complex medical circumstances.

“One thing the Web doesn’t do is personalize the information,” she says. “That’s what physicians do.”

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A Note on Blogging and Medicine

Some of you may have noticed I’ve been quiet for a few days. That’s because I’ve been working on the elements of my new Medical Lessons site. Among the things I’ve learned since starting this project in mid-November, just 2.5 months ago, is this –

Blogging is like practicing medicine in some surprising ways:

1. You learn how to blog by doing it;

2. What you say, and how you say it, makes all the difference;

3. Some people will appreciate your style, others won’t;

4. You have to be careful, details can make things go right or wrong;

5. There’s never enough time in the day;

6. It’s fun, interesting and rewarding (largely in intangible ways);

7. You have to stay current to be good at it;

8. You get to interact with all sorts of people;

9. You’re constantly learning;

10. I love it.

As soon as the new site is ready, you’ll find the directions automatically.

Not to worry – I’ll be writing lots, then and there. Once the formatting’s done I’ll have more time to spend on ideas and information.

See you there!


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