Crowd-Sourcing a Medical Puzzle

The Times ran an intriguing experiment on its Well blog yesterday: a medical problem-solving contest. The challenge, based on the story of a real girl who lives near Philadelphia, drew 1379 posted comments and closed this morning with publication of the answer.

Dr. Lisa Sanders, who moderated the piece, says today that the first submitted correct response came from a California physician; the second came from a Minnesota woman who is not a physician. Evidently she recognized the condition’s manifestations from her experience working with people who have it.

The public contest – and even the concept of using the word “contest” – to solve a real person’s medical condition interests me a lot. This kind of puzzle is, as far as I know, unprecedented apart from the somewhat removed domains of doctors’ journals and on-line platforms intended for physicians, medical school problem-based learning cases, clinical pathological conferences (CPC’s) and fictional TV shows.

In this example, the patient’s diagnosis was known, and treatment successfully implemented, before publication. Surely the Times legal team carefully reviewed those scanned commercial lab reports with the wiped-out patient’s name and address, and likely they got the OK from the patient and her family to run the story as they did. There were sufficient details included that she’s likely identifiable to some people in her community.

The case is instructive at many levels: It’s not just about the girl and her symptoms and her disease, and how doctors think, but about how the population of New York Times readers approached it over the course of 24 hours. A question an editor, if happy with the “results” – i.e. the on-line turnout (clicks, emails, tweets…) and lack of flak – might ask is what sort of case to use next week or next month, and how perhaps to improve on the presentation.

The question I ask as a physician is this: why we don’t have this sort of crowd sourcing for tough, unsolved medical cases? Privacy is an obvious concern as is, perhaps, physicians’ fear of missing something or being wrong. Also, if a diagnosis isn’t already determined, the responsible doctor might end up (and likely would) order more tests and, perhaps, harm the patient by chasing zebras and heeding some well-intentioned but absurd or simply wrong suggestions from a diverse collection of world-wide readers. So there would be a problem of “too many cooks” among other issues.

On the other hand, a single physician dealing with a challenging case would have, potentially, access to the expertise of millions of people, perhaps a few who have genuine insight and have seen a rare situation before. Doctors needn’t think in silos.

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A Video About a Robot and a Patient

Since Watson won on Jeopardy, there’s been lots of talk of robots assuming doctors’ roles. Ten years into our future, machines with programmed empathy and nuanced diagnostic skills will solve diagnostic dilemmas, deduce optimal treatment and make us well.

Yesterday I found a new Xtranormal video, this one crafted by Dr. Charles of his excellent Examining Room blog, on Dr. Watson and the 7 Qualities of an Ideal Physician.

from the Examining Room of Dr. Charles

Dr. Charles cites a 2006 Mayo Clinic Proceedings review on what patients say are essential characteristics of a good physician: The ideal doctor is confident, empathetic, humane, personal, forthright, respectful, and thorough. In this clever, short movie crafted by Dr. Charles, the robot-doctor tries to demonstrate his capability in each of these dimensions in his interaction with a cartoon patient.

I hope the folks over at IBM, who are collaborating with real medical centers now about designing artificial doctors’ intelligence, might take a close look at this video.

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First Inspection of Google’s Anatomy


Google Woman (Body Browser, clad)

This morning I toured Google’s new Body Browser. The trip wasn’t as easy as I’d envisioned; I got sidetracked on my way, having to update my Web browser before entering. The site requires an advanced Web browser, like Chrome beta or Firefox 4.0, to accommodate 3-D graphics.

Update accomplished, I forged into Google-woman’s frame. (There is no man available, as yet.)

muscles, frontal view

The muscles appear well-defined, though I’m no orthopedist. The platform reveals the piriformis, an obscure muscle beneath the glutes for which a physical therapist once gave me strengthening exercises. I could see the psoas major, which I’d learned years ago to check for tenderness by examining the abdomen while moving a patient’s hip in a specific manner.

The bones could definitely use some work. The 5 lumbar vertebrae should be numbered, as might be the 12 thoracic and 7 cervical elements of the spine, to name a few among many missing details in the skeleton. At various points the woman’s blood vessel system, or circulation, mixes in with her peripheral nerves. The brain findings are surprisingly limited. (all accessed 12/29/10)

This version of Google’s Body Browser remains in lab mode, for good reason. Still, it’s pretty amazing – you can twist and turn the human’s body, peel away layers and isolate nerves of interest. Knowing some anatomy and terms, I honed right in on the woman’s trigeminal nerve, choosing an oblique and semi-transparent view of her neck and head.

piriformis muscle, found

I think the potential for this Web-tool is huge. Doctors could learn with it. And although some of my colleagues might mind my saying so, this sort of platform might eliminate or at least reduce the need for so many cadavers for medical school education. As for providing patients with understandable information, this has tremendous value. Imagine sitting in a physician’s office with a computer screen as she points to a joint that needs repair, in real-time and 3-D, or explains the risks of prostate surgery, due to the nerves and other structures that run through or nearby that particular gland.

trigeminal nerve, revealed

Google’s developers have a lot of work ahead on this project. Like Google Maps, this should allow people to see things that will help them make sound decisions. We’re not quite there yet, but close.

For now it’s fun to look click through Google’s anatomy. It’ll be interesting to see how this terrific application progresses.

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The Word of the Week is Cyberanarchist

The word of the week appears on the front page of today’s New York Times in an article on a crowd-sourced response to WikiLeaks: “the Internet assaults underlined the growing reach of self-described “cyberanarchists,” antigovernment and anticorporate activists who have made an icon of Mr. Assange, a 39-year-old Australian.”

You won’t find a cyberanarchist reference in my old copy of the Oxford English Dictionary. A search led me to a 1998 Chicago Law Review article considering the “fundamental question of whether the state can regulate cyberspace at all.” Another hit led me to a site called cyberanarchy.org, which I don’t recommend to my readers unless you’re really, really into repetitive heavy metal with uninterpretable words set to a screen-filling red anarchism “A” symbol comprised of tiny flickering 0’s and 1’s.

The origins of the compound word are a bit interesting. According to the on-line edition of the Merriam-Webster Dictionary:

Cyber is a new prefix: “of, relating to, or involving computers or computer networks (as the Internet),” with first known use around 1991.

Anarchist is one who rebels against government or espouses anarchy, with origins listed: “Medieval Latin anarchia, from Greek, from anarchos having no ruler, from an- + archos ruler …First Known Use: 1539″

I searched for a deeper meaning of cyber and found little. The only credible thing I came upon in English is on Dictionary.com:

Cybernetics:

…the study of human control functions and of mechanical and electronic systems designed to replace them, involving the application of statistical mechanics to communication engineering.

I’ll let my readers and other word enthusiasts take it from here –

There is, of course, an @CyberAnarchist on Twitter, but as of this morning he or she has only 6 followers, tweets nothing and follows no one. A pre-emptive strategy?

The non-etymological, semi-medical lesson in this: be careful!

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Twitter, The Notificator, and Old Social Media News

A series of clicks this morning brought me to an interesting web finding in a Wiki-like Dead Media Archive that links to NYU’s Steinhart School of Media, Culture, and Communication.

Dead Media Archive, NYU Steinhardt School of Media, Culture and Communication

And there rests the Notificator, said (by me) to be Twitter’s great-great-great grandfather, with details:

On September 9, 1932, the London Times printed an article following up on a “correspondence in The Times proposing that British railway stations might, like those in Japan, provide facilities for messages from one person to another to be displayed.” An electrical engineer had written to the paper, agreeing, and noted a device that he had heard of; an “automatic machine…to be installed at stations and other suitable sites, and on the insertion of two pennies facilities were given for writing a message that remained in view for two hours after writing.”

The archive cites the August 1935 issue of Modern Mechanix & Inventions Magazine: “To aid persons who wish to make or cancel appointments or inform friends of the whereabouts… the new machine is installed in streets, stores, railroad stations or other public places where individuals may leave messages for friends… The machine is similar in appearance to a candy-vending device.”

In case you’re interested, my starter source was today’s post on Get Better Health by Dr. Westby Fisher on the Pros and Cons of Social Media for doctors. There, a link in a list “you may also like these posts” drew my eye: Twitter First Conceived By British Hospital In 1935. That July, 2009 post by Berci of ScienceRoll, included an image of an unidentified old-appearing newspaper with an intriguing photo of a man with a hat pointing to a strange device with the word “Notificator” at its top.

A Google search of the headline, “Robot Messenger Displays Person-to-Person Notes in Public” led me to a 1935 Modern Mechanix issue (with the fabulous logo, “YESTERDAY’s Tomorrow TODAY”), some Russian blogs and, finally, the Dead Media Archive, based in principle if not in fact, somewhere near my home in Manhattan, 3 miles or so north of NYU.

This Web find is a good example of how social media and on-line reading can accelerate learning and finding new (and in this case old) ideas. And what goes around comes around –

The Dead Media Archive brims with interesting stuff, worth a virtual visit!

I may go check it out in person, sometime later, for real, if that’s possible –

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Progress at the Orthopedist’s Office

This morning I visited my spine surgeon for a check-up. What’s nice is the feeling I have about his office staff: they’re pleasant, gentle people who seem always eager in their work, and that helps. I got big hugs from his nurse, an office manager and biller. Even the x-ray technician seemed glad to assist me.

The orthopedist is a wonderful man whom I credit for my continued capacity to walk. All good –

For the first time in 12 years of visits to his office, the x-ray images of my bones were represented on a digital device, as opposed to old-fashioned, plane films clipped onto a light box. The surgeon was able to enlarge and examine more carefully an area of concern without my being exposed to additional rads. Even more fortunately, the fusion looks steady.

Once I arrange to get a copy of the digital image (a hassle with inexplicable, inexcusable high costs, as per hospital protocol), I can include that in my electronic personal health record (PHR), one of my planned projects for the year ahead.

Progress in health care is painstakingly slow. Today I’m encouraged.

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A Video About a Patient Who Might Have Too Much Information

A link to a video, the Too Informed Patient came my way several times lately. You can find the curious clip on NPR’s Marketplace site:

The Too Informed Patient from Marketplace on Vimeo.

The skit depicts the interaction between a young man with a rash and his older physician. The patient is an informed kind of guy – he’s checked his own medical record on the doctor’s website, read up on rashes in the Boston Globe, checked pix on WebMD, seen an episode of Gray’s Anatomy about a rash and, most inventively, checked i-Diagnose, a hypothetical app (I hope) that led him to the conclusion that he might have epidermal necrosis.

Not to worry, the patient informs Dr. Matthews, who meanwhile has been trying to examine him (“say aaahhh” and more), he’s eligible for an experimental protocol. After some back-and-forth in which the doctor, who’s been quite courteous until this point – calling the patient “Mr. Horcher,” for example and not admonishing the patient who’s got so many ideas of his own, the doctor says that the patient may be exacerbating the condition by scratching it, and questions the wisdom of taking an experimental treatment for a rash.

“I just need you to sign this paper,” says the patient.

The doctor-puppet pauses momentarily, seemingly resigned to a new role. After the patient leaves, the doctor thinks to weigh himself. The skit ends with the sounds of keyboard typing.

The piece supplies thought-provoking details in under 2½ minutes. It’s a useful teaching tool, among other things. There’s been some discussion about it on the NPR site, the Patient Empowered Blog, the Health Care Blog and elsewhere. Some comments suggest annoyance, that the “informed patient” is misrepresented here as exaggerated or foolish, or that the skit is off-mark.

To me it rings true, representing an older doctor who’s trying, open-mindedly but not at the cutting edge, to embrace new technology, and has the patient’s interests at heart. His efforts and his knowledge are set aside.

My reaction is sadness. Am I the only one?

Thanks to the team who created this insightful production: produced by Gregory Warner and Mara Zepeda. Created by Sebastienne Mundheim of White Box Theatre, acted by Charles DelMarcelle and Doug Greene, and voiced by two actors from Philadelphia’s Pig Iron Theatre Company, and to NPR’s Marketplace for presenting.

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Links Add Value to On-Line Reading and Medical Blog Content

This post is intended mainly for medical bloggers, but it has applications elsewhere. It’s about links and uniform resource locators (URLs), terms that I didn’t fully appreciate until the last year or so. That’s because like most of my colleagues and readers, I grew up reading printed books, newspapers and magazines. Now, perhaps as much as 90 percent of the non-fiction I read is on-line.

The Web has a lot of advantages for readers – you can see multimedia presentations, or double-click to enlarge a graph of interest. What I think is best, though, is the third dimension of information that’s sometimes provided: supportive links.

Hyperlinks, which come as urls embedded in on-line text, provide immediate access to relevant ideas and sources. For example, any reader here should be aware that what prompted this mini-essay was a recent piece on the med-blog 33 Charts in which the author, Dr. Bryan Vartabedian, suggested that link over-use can detract from the reader’s experience. As he indicates, appropriately, his post was prompted by Phil Baumann, who wrote on the value of links, particularly for the purpose of author attribution.

I suppose that excessive links might distract a reader or might even be self-serving, especially if they lead to content for which the author has some ulterior motive to connect, such as a website where my book is for sale (a strictly theoretical concern, for now). Turns out that bloggers have debated the link-bait problem for years; some suggest we insert links to acquire Google Juice, i.e. connections that support search engine optimization (SEO) and blog rankings.

But I don’t care about that, at least not primarily. Rather, an author’s responsibility to credit someone whose ideas influenced her work overrides other concerns. Consider this: if at, an academic conference a lecturer draws upon another researcher’s data but doesn’t mention that person, for fear of seeming like a brown-noser or for not wanting to draw her listeners’ attention to that investigator’s work. The presentation would be considered sloppy, at best, and might border on plagiarism. Another “reason” for omission is laziness; it takes work to find an on-line reference or supporting data to justify a point you’re making. You might not remember exactly where or when you heard of an idea, so you just spell it out in a post and, over time, might even forget that you were influenced by another’s post, full-length article or even a book you read years ago.

From the reader’s perspective, links enhance an article’s utility by providing related articles and data. With appropriate connections, a reader can easily take at look and judge for herself what she thinks of whatever it is you’re talking about in a blog post. Take a real example, for instance: if I refer to the number of individuals in the U.S. who are diagnosed with cancer of the brain and nervous system, you could click and check that the National Cancer Institute estimates that would be around 22,000 for 2010. Without the link, you’d just have to take my word for it.

So I wish bloggers, and medical bloggers in particular, would provide more links to support what they write. Otherwise, what we say amounts to “I think X,” and nothing more.

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No More Clipboards

“This kind of aid to decisions, spread across tens of thousands of decisions every day, leads to much, much lower costs with no intrusion on clinical autonomy”

– David Blumenthal, M.D., M.P.P., National Coordinator for Health Information Technology, U.S. Department of Health & Human Services, speaking at Weill-Cornell Medical College, Sept. 15, 2010

Last week I had the opportunity to hear Dr. David Blumenthal, head honcho for national health IT development, give a presentation on electronic health records (EHR), the future of health information technology (IT) and meaningful use. He spoke at a health policy colloquium at Weill-Cornell Medical College.

The points he made were clear – to begin, that health IT encompasses three areas of value:

1. Electronic Health Records (EHR)

2. Health Information Exchange (HIE)

3. Clinical Decision support (CDS)

Notes on Electronic Health Records:

“What do patients think if you ask them what’s the value of an EHR?” he half-asked the audience, a group of 250 or so, mainly physicians. He answered: “No more clipboards.”

The problem is that doctors are reluctant to take on electronic systems. Prior to the Health Information Technology for Economic and Clinical Health Act (or HITECH Act) of 2009, only 6 percent of physicians used fully-functional EHRs; only 20 percent used any EHR in their practices. Hospitals weren’t doing any better, he said. We’re running far behind our European counterparts in this arena.

“What’s the barrier?” he asked, and answered: “Money is numbers one through eight. Then logistics, technical problems and fear.”

Physicians, and hospitals, are concerned about buying into systems that will become obsolete. “And it’s a psychological issue,” he added. “That comes in whenever you’re asking people to change.”

The benefit of EHRs will be more efficient care and better health outcomes. As things stand, the quality of a nurse or doctor’s care is limited by the information they have about the patient in front of them. If providers have access to a patient’s compete record – say a cardiologist who’s evaluating a patient with notes provided by the primary care provider (PCP) – that’ll save both parties (patient and doctor) time, reduce duplication of tests and facilitate the coordination of care.

But the real value in EHR, he suggests, is in the system’s potential output of information: “Cutting down the rate of dissemination of conventional information from 17 years down to months to weeks.” What he means, as I understand it, is that by having current findings – published data and recommendations – linked to a patient’s electronic chart and diagnostic codes, the doctors will see and (hopefully) read new materials having to do with their patients’ medical conditions.

Notes on Health Information Exchange:

This component of health IT relies on having a common language. “If physicians don’t speak the same language, their computers won’t either.” He emphasized the need for standard terms using this example: there are many ways to say “high blood pressure” in English; for a health information exchange to be functional, we need to agree on one term and use it.

“Information exchange is a team sport,” he considered further. “It’s a challenge, and we’re not always good at voluntary collaboration.”

Next, he listed some HIE essentials:

– a vocabulary and statistics (I’m not sure why these were paired as he spoke);

– a way of packaging information that it can travel on the Internet;

– electronic directories, so information goes where it should;

– protocols for delivery;

– security in transit.

What will it take to get physicians on board with this kind of plan? “We need economic incentives, trust, and requirements,” he indicated. Mandates might, in the future, involve licensing boards and other accrediting agencies that would test physicians’ competency in HIT. In his view, managing electronic information is an essential skill for doctors to provide effective medical care.

Notes on Clinical Decision Support:

First, he listed the four elements – algorithms, statistics, guidelines and institutional policy – that can be incorporated into CDS to promote evidence-based practice.

Second, CDS allows for Computerized Provider Order Entry (CPOE). This is a huge benefit at several levels, but the surprise for some in the audience is that the process becomes an opportunity for continuing medical education (CME).

(The idea for doctors’ learning as they enter orders, which I think important, is this, and  I’ll provide my own example here: if you’re a physician about to order a drug, like a new antibiotic for a patient who’s got liver failure, the computerized system might have a pop-up message that says “are you sure you want to order that? Antibiotic X is metabolized by the liver…” And so you’d learn that the new antibiotic X is metabolized by the liver, and you might then look over a readily-accessible table of alternative antibiotics.)

“This caught my interest because it doesn’t diminish physicians’ autonomy,” he said. It just enables them to make decisions for their patients in the context of additional, current information. “The end goal is not to adopt technology, but to improve care.”

Notes on Meaningful Use:

He listed “five pillars of meaningful use”:

1. patient and family enlightenment

2. coordinated care

3. quality, safety and efficiency

4. privacy and security

5. improved public and population health

Then the discussion turned to some big money questions – including a critical issue having to do with companies competing to develop better EHR systems and physicians’ incentives. If you’d like to read more details about meaningful use, I recommend a recent perspective in the New England Journal of Medicine and a brief in the August issue of Health Affairs, to which Blumenthal referred during his informative talk.

As for me, I’m tired of clipboards. I look forward to expanded health IT and EHRs. In the future, patients will be more informed in their decisions, and doctors will be in theirs. Maybe, sometime…

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Why Physicians Shouldn’t Tweet About Their Patients Or O.R. Cases

I fear this post may be a bit of a downer for some e-health enthusiasts, Internet addicts and others who might otherwise follow @medicallessons, but after nine months of “studying” medicine on Twitter, I’ve reached the conclusion that it’s probably not a good idea for most practicing physicians to use 140 character Web-broadcasted messages for communicating with or about their patients.

Sorry if I’m ruining a tweetchat, tweetup or doctors’ virtual party somewhere. I just don’t think these belong in the doctor’s office or, especially, in the O.R.

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Doctors Not Using Email Like It’s 2010

There’s been a recent barrage of med-blog posts on the unhappy relationship between doctors and electronic communications. The first, a mainly reasonable rant by Dr. Wes* dated August 7, When The Doctor’s Always In, considers email in the context of unbounded pressure on physicians to avail themselves to their patients 24/7. That piece triggered at least two prompt reactions: Distractible Dr. Rob’s** essay on Why I Don’t Accept eMail From Patients and 33 Charts‘ Dr. V on The Boundaries of Physicians Availability.

Perhaps the most astonishing aspect of these three guys’ essays is that, in 2010, there’s still a question about whether doctors should use email to communicate with patients. It’s hard for me to imagine physicians – including bloggers – so disconnected. But many are.

Last year, I had the opportunity to speak with Professor Nathan Ensmenger, a historian of technology at the University of Pennsylvania who’s studied physicians’ use of the Internet and email. Physicians aren’t luddites,” he told me. “On the whole, they’re a computer-savvy group, among the first to use the Internet in research and for professional development.”

Ensmenger contrasted doctors’ hesitation to take on email with patients with their early espousal of the telephone, which facilitated their practices and care in the early 20th Century. Doctors might want to work on-line, he suggests, even out of self-interest: the asynchronous nature of email, by contrast to telephone calls, affords more flexibility and workload control. Published studies, including an early 2004 report in the British Medical Journal, cite evidence  that an overwhelming majority of patients would welcome the chance to communicate with doctors by email. Nonetheless, many medical providers refuse to email patients.

Here’s a partial list of reasons why some doctors are reluctant to get on board with this (1990s) program:

1. Physicians don’t get compensated for time spent emailing patients.

2. Any written communication with a patient, or about a patient, is a potential liability that might be used in a malpractice suit against them.

3. There might be a breach of patient’s privacy if the email is not sufficiently secure, encrypted, or is accidentally sent to the wrong person.

4. Email is a time sink, dragging physicians further down the slippery slope of doing more, undervalued work.

Each of these points has some merit, I admit. I am most persuaded by Dr. Wes:

…This is not a new trend. We saw a similar situation years ago with the advent of the digital beeper. Even the most basic of private bodily functions in the bathroom could be interrupted at a moment’s notice. The expectation that phone calls should be returned instantly grew from this – personal context be damned. Doctors were accepting of these intrusions, however; the feeling of being omni-present, omni-available, and omni-beneficent fit nicely with the Marcus Welby, MD psyche of the time…

So the problem is that doctors are human, i.e. we have limits. Which of course isn’t a problem, but a good thing. I don’t particularly care for robotic physicians.

I’m not sure how to resolve this, but here are my thoughts:

1. About the compensation issue – I think physicians should be salaried rather than paid per unit of work. Communication is an essential part of what physicians do, and so this type of task should be included in their designated workload – whether that’s part-time or full-time.

2. About liability – we need medical malpractice reform, sufficient such that physicians aren’t afraid to write messages to people who are their patients.

3. About privacy – this seems a relatively bogus excuse. Compared to faxing, email is far superior in regard to privacy. And, as many others considering this issue have pointed out, we’ve learned to trust internet-based communications for other critical matters such as bank accounts, credit cards, etc.

4. About physicians’ time – this is a critical issue that hits close to home. Unless the health care system evolves so that mature doctors can carry out expert, interesting and careful work with reasonable hours, few bright young people will choose careers in medicine, and more seasoned physicians will have to stop practicing to protect their own health and well-being. And then we’ll all lose out.

So I don’t think that physicians shouldn’t use email – they should. But the system needs adapt to the 21st Century.

*Westby G. Fisher, M.D. is a cardiologist who blogs as Dr. Wes;

**Robert Lamberts, M.D. is a primary care physician who blogs on Musings of a Distractible Mind;

***Bryan Vartabedian, M.D. is a pediatric gastroenterologist who supplies 33 Charts.

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Some Notes after Grand Rounds, and Questions for Medical Blogs and the Internet

Earlier this week I had the opportunity to host med-blog Grand Rounds. This honor – or assignment, depending on your perspective – came just in time for the new academic year.

(That would be today, July 10, 2010 – welcome new students! and interns! and “mature” doctors without supervision!)

Coincidentally, or not, over the past year I’ve made it my business to study what some might call on-line medicine. Since completing my J-School (that would be J for journalism, just to be clear) degree, I’ve spent much of my time reading, clicking and otherwise navigating through the medical blogosphere and greater Web.

So far I’ve tried to examine what’s out there – websites, on-line newspapers, magazines, blogs, advertisements, academic medical journals, Twitter, videos and more – as best I can, to understand how people find and share information having to do with health. What I’ve learned, largely confirming what I thought previously, is that the Internet as a source of medical information is a complex, evolving, powerful and largely unregulated instrument.

Some key questions for the future:

1. What is a blog and how might that be distinguished from, say, a website with ads and text, or from a newspaper or multimedia conglomerate with an engaging on-line section?

2. How might a reader identify a medical blog or health-related website? Is there a reason to separate these kinds of Internet domains from those concentrating on wellness, health care delivery, science, ethics or policy issues?

3. How much value, if any, should we assign to articles for which the author is unknown?

4. The issue of conflict of interest (COI) is slowly working its way into academic medical journals and continuing medical education programs for physicians. But on-line there’s essentially no regulation and it would be hard to implement any disclosure requirements even if there were. How the public might be informed of COI regarding on-line content – whether that’s provided by individual bloggers, newspaper-employed journalists, med-tech companies or pharmaceutical corporations – seems a critical issue for the future.

Any thoughts?

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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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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!

ES

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Beware the Power of Data Handling in Politics (and Medicine)

Into my Google Reader this morning came a post from Biophemera (an intriguing blog at the interface of art and science). Scientist-artist-blogger Jessica Palmer offers a provocative clip featuring Alex Lundry, a self-described conservative political pollster, data-miner and data visualizer.

Alex Lundry Chart Wars: The Political Power of Data Visualization
more about “Alex Lundry Chart Wars: The Political…

Some excerpts:

“These charts are meant to illustrate the political power of data visualization. It’s a discipline that’s only just beginning to bloom as a messaging vehicle…

“So what changed, why now?” he asks rhetorically.

“Well of course the internet…What’s really changed is data. We capture more data, we store more data and more data is available to us in machine-readable parsable format. So it’s really gotten to the point where anybody with a computer can create a data visualization easily enough…

“Here are a few quick lessons in graphical literacy…You’ll see that messing around with the origin and axis can make unimpressive growth look pretty amazing, right?…

——

Scary stuff. We’re vulnerable to brainwashing by pie graphs with pretty colors. Men are hired to collect and represent data with a particular aim. And there’s more to come this way, faster than ever by twitter.

So why here? Why a Medical Lesson?

Because the same is true for health information.

——

One of the first rules of medicine is knowing your sources. Before you make a decision, consider: did you read or hear about a treatment in a textbook, in a reputable journal, at a scientific meeting or over lunch with a representative from a pharmaceutical company?

Immersed in data as we are, it’s tempting to grasp at the best-presented material regardless of its intrinsic value. Nifty graphs can persuade or fool even the best of us.

For patients:

1. Know your doctor – be aware of industry ties, academic connections and other sources of pressure to perceive or publish results more clearly than they are;

2. Distinguish ads from articles about health – the difference is not always clear, especially on-line;

3. Read the fine print and identify the perspective of who’s depicting “data” in charts and graphs – when medical information comes onto your TV screen or magazine page, there’s a good chance someone’s got something to sell you.

For doctors:

1. Remember the difference between peer-reviewed journals and PeerView Press (a CME company with a host of industry sponsors, one of many such that provide free, neatly-packaged information targeted to busy doctors);

2. Take the trouble to read the methods and statistical sections of published papers in your field – your patients are counting on you to discern good studies from bad;

3. Don’t forget we’re human, too. We’re vulnerable, drawn to promising new results –

Mind those origins and axes!

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Moms Tweet About Blood and Cancer

This afternoon I found a Tweet from a colleague, a journalist who happens to be a mom in my community:

Tweet from SuSaw:

“RT @JenSinger: Hey, baby. What’s your blood type? Nothing against the Big Pink Machine… http://ow.ly/URkg

As a trained hematologist (blood doc), oncologist and breast cancer survivor, I couldn’t resist checking this out. Here’s what I discovered:

The link traces to MommaSaid.net. Turns out MammaBlogger Jen Singer counts herself among lymphoma survivors in remission. Another mom in remission, I might add –

Jen clues us in on a new breast cancer awareness campaign that migrated to Facebook but three days ago – breast cancer awareness ? I updated my Status with my Bra colour ? and, as of this moment, has over 57,000 fans. Her solidarity with breast cancer patients and their loved ones is very real. She’s at increased risk, among other reasons for her sensitivity to the issue.

Jen plugs for greater public consciousness of other malignancies including tumors that arise from blood cells – conditions like non-Hodgkin’s lymphoma, leukemia and myeloma. She’s particularly concerned about a young neighbor, a teenager with recurrent leukemia, who needs blood now.

In a post “O Positive is the New Pink” she writes:

“So, I ask you this: Please put your blood type in your Facebook status and ask your friends to do so, too, to raise awareness for lymphoma and leukemia. Mine is O+, a blood type…

I was blown away by this, and impressed. What social media might do for the practice of hematology!

With just a few clicks at the keyboard and some thousands of on-line connections, one lymphoma survivor has improved the chances that one girl with leukemia will get the platelets she needs. And, maybe thanks to the Facebook blood typing information campaign, more potential blood donors will connect with those who need cells in the future.

Last year, Phil Baumann listed 140 potential applications for Twitter in health care. I was curious but skeptical. Now I’m partly persuaded, at least.

Besides, just think what three moms can do. It takes a village…

——-

More soon – on giving blood, blood types and blood cells.

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Skyping Medicine

Yesterday, Dr. Pauline Chen reported in the New York Times on virtual visits, a little-used approach for providing care to patients hundreds or thousands of miles apart from their physicians.

Telemedicine depends on satellite technology and data transfer. It’s a theoretical and possibly real health benefit of the World Wide Web, that giant, not-new-anymore health resource that’s transforming medicine in more ways than we know.  Chen writes:

Telemedicine has the potential to improve quality of care by allowing clinicians in one “control center” to monitor, consult and even care for and perform procedures on patients in multiple locations. A rural primary care practitioner who sees a patient with a rare skin lesion, for example, can get expert consultation from a dermatologist at a center hundreds of miles away. A hospital unable to staff its intensive care unit with a single critical care specialist can have several experts monitoring their patients remotely 24 hours a day.

I’m reminded of three things:

First, my recent visit to my internist’s office on East 72nd Street, a short walk from my home. When I see my doctor she smiles warmly, shakes my hand firmly and examines me from head to toe. She takes my blood pressure with an old-fashioned sphygmomanometer, looks at my eyes and into my throat, applies a stethoscope to my scarred chest as she listens to my heart and lungs, and palpates – “feels” in doctorspeak – my lymph nodes, liver and spleen. All that along with a neurological exam; she sees how I stand, walk and balance my head over my torso.

Second, my husband’s conversation with his mom yesterday evening, via Skype, transmitted between his laptop in our living room and her computer in a Buenos Aires apartment.

Third, some history from the 1950s – on how early computer scientists envisioned the future of medicine. From my master’s thesis at Columbia University’s Graduate School of Journalism, on how the “How the Internet is Changing the Practice of Oncology”:

When Vladimir Kozmich Zworykin addressed the 1956 assembly on “Electrical Techniques in Medicine and Biology,” he marveled at the technological feats of computers, and envisioned how these new instruments might be applied in health care. Zworykin, an inventor of television …was privy to the newest developments in applied science.

…He’d seen closed-circuit “Telecolor Clinics” that transmitted the latest cancer research news to physicians in cities along the eastern Seaboard and Great Lakes Region. A color, television microscope linking monitors in Philadelphia, Washington and Baltimore enabled doctors in one city to identify cancer in another…

We’re back in the future! My take on telemedicine includes three components; each corresponds to one association above.

1. Telemedicine is not the same as real medicine. I like seeing my doctor in real life and am reassured by her true presence in the room.

Besides, a hands-on exam has some tangible benefits. A good doctor, who knows how breathing sounds should sound, confident in her examination skills, might skip an x-ray she’d otherwise order. A competent hematologist, skilled in palpating her patients’ lymph nodes, liver and spleen, could spare us the costs and risks of some CT scans and MRIs.

Of course, the doctor’s hands should be clean… (a topic unto itself)

2. Virtual visits might help. The reality of medicine requires innovation and compromise – making the best of a sometimes difficult situation.

As Pauline Chen points out in her column, there’s a shortage of doctors affecting some, particularly rural, parts of the U.S. Policy experts anticipate the problem won’t go away with current health care reform measures, and some business reports warn the situation will get worse. Telemedicine, while not ideal, might ameliorate this effect and make a positive difference in the health of people living far from major medical centers. The technology could, indeed, connect patients with specialists who would otherwise be out of reach.

3. The future of medicine will embrace some elements of telemedicine. We just need to fine-tune the process.

As I see it, Internet or satellite-directed medical examinations are most promising for image and data-centric fields like radiology and pathology. It’s telling that Pauline Chen’s first example pertains to dermatology (skin diseases). Sure, I think a far-away expert’s view of a skin lesion could be helpful – it might reassure some that a mole or a rash is nothing to worry about, or inform them that indeed, they should hop on a train to Memphis. For patients with benign-appearing lesions, telemedicine could save costs and time in travel and unnecessary appointments, besides biopsies.

But I’m wary of implementing this tool in primary care areas and interventional fields like surgery and obstetrics. The prospect of delivering babies upon real-time instruction by doctors in cities far away is not what I’m hoping for, at least not for my kids’ kids.

I guess we’ll have to wait and see.

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Looking Ahead: 7 Cancer Topics for the Future

Here’s my short list, culled from newsworthy developments that might improve health, reduce costs of care and better patients’ lives between now and 2020, starting this year:

1. “Real” Alternative Medicine. By this I don’t mean infinitely-diluted homeopathic solutions sold in fancy bottles at high prices, but real remedies extracted from nature and sometimes ancient practices.

A good example is curcumin, a curry ingredient from the root of the turmeric plant. We’re just starting to uncover this compound’s anti-cancer effects in humans. Another natural antidote that’s gaining ground is green tea; scientists are sifting through its components to see how it reduces cell growth in some forms of leukemia and other tumors.

2. Chemotherapy Pills. Why get treatment through an intravenous catheter if you can pop some pills instead? To be clear, some of the best and most effective cancer therapies require infusion. And just because a medication can be taken by mouth doesn’t mean the side effects are trivial.

But quite a few targeted therapies, like Gleevec or Tarceva, besides some old-fashioned drugs like Leukeran and new forms of old agents, like Xeloda, work just fine in pill or capsule form. Many patients, especially those with limited life expectancies, would gladly choose an oral combination therapy, the sort of medication cocktail taken by AIDS patients only for cancer, instead.

A gradual shift from intravenous to oral therapies for cancer would transform the practice, and economics, of oncology as it’s practiced in North America.

3. Environmental Hazards. Where we live, what we carry and ingest surely affect our bodies and our cells. We’ve learned about Bisphenol A (BPA), an estrogen-like molecule that leaches from plastic food containers into the foods we eat.

Now, we should expect and demand more information on what’s really in the water, so to speak. And in our sunscreens, and in so many chemicals we use routinely and without hesitation.

4. Health Informatics. The Pew Research Center reports that two thirds of American adults are going on-line for health information.

But that’s only part of the story. Sure, the internet makes it easier for people to learn about medical conditions, but the same applies to physicians. In principle, the internet should help doctors stay current, make sound decisions and provide better care.

Electronic health records (EHRs) will, in the long run, reduce costs from duplicate testing, faxing and re-faxing of reports and, more importantly, lessen errors from illegible or incomplete medical files that are too-often inaccessible. Over the next decade, we’ll see how patients find value in their own records (or don’t), how privacy issues play out, and if electronic documentation of millions of health reports provides, in itself, new information on disease trends and treatment effects.

5. Better Cancer Monitoring. The costs and risks of repeated CT scans are very real.

For a cancer patient undergoing therapy, the current standard involves multiple scans at intervals of months or even weeks, to see how a tumor is responding, or not, to a particular treatment regimen. Once in remission, some people undergo additional periodic studies just to be sure there’s no evidence for the tumor’s recurrence.

The news is that easier, more accurate and less dangerous methods for monitoring tumors are forthcoming. Using microchip-based detectors doctors can, using just a few drops of blood, measure the extent of a colon or lung cancer and examine how tumor cell genetics change during treatment. Over time, this and similar technologies will improve and, with standardization in manufacturing, come down in price.

6. Palliative Care. Not everyone wants to spend the last days of his or her life in an ICU hooked up to a ventilator with tubes and intravenous lines. But few people prepare for the end of life when it happens in a hospital, and doctors don’t generally talk about it in advance.

Palliative care, the kind of medicine aimed at treating symptoms, rather than achieving cure, is underused in the United States. Over the next decade, we should see better education of doctors in this essential field in cancer medicine, and of the public, too.

7. Cancer Vaccines. These work by immunizing a person against a tumor just as one might, instead, inoculate a person with a modified virus or bacterium to stave off infection.

Cancer vaccines would stimulate and harness the body’s normal immune cells to confront and eradicate cancer cells. This year, the FDA will take another look at Provenge, a vaccine that’s designed to treat men with prostate cancer. Similar biological agents are in the works for most other tumor types.

We’ll be hearing more on these innovative drugs that, so far in clinical trials, appear to have few side effects. Whether the vaccines are effective – if they can shrink tumors – we’ll have to wait and see.

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