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Perspective on Screening for Sickle Cell Trait in Student Athletes

Today I watched a video, The Student-Athlete with the Sickle Cell Trait, sponsored by the National Collegiate Athletic Association (NCAA) on its website. The 12-minute presentation provides some helpful background on what it means to have sickle cell trait and how awareness of that condition might influence a student’s (or coach’s?) behavior during rigorous conditioning and competitive sports.

“The more medical information we know about our student athletes, the better equipped we are to help keep them safe,” says Mark Richt, Head Coach at the University of Georgia, at around 3 minutes into the clip.

A new NCAA policy mandates screening all Division I college sports participants for sickle cell trait. Not coincidentally, the Sept 9 issue of the New England Journal of Medicine opens with a noteworthy perspective* on this topic. The screening recommendation, effective at the start of this academic year (i.e. now) directly affects more than a few young adults in the U.S.: among nearly 170,000 athletes who’ll be tested this year, it’s expected that several hundred “carriers” will be identified.

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A Visit to Suffragette City

For two days I’ve been traveling on a short road-trip with my family in Upstate New York. As far as this turning to a medical lesson, all I can say is that for the first time in my life I witnessed, first-hand, the vaguely digital, elongate and eponymous geography of the fine Finger Lakes.

morning view, by Seneca Lake

It’s beautiful around here. I’ve found it a fine place to get some reading and writing done, besides taking in some local college scenery. While here, we had the opportunity to review some New York State’s history and, in one memorable moment for yours truly, stopped briefly in the village of Seneca Falls.

There, in 1848 a group of local women, mainly Quakers, organized an early convention here on the topic of women’s rights. Some 300 progressives attended the Seneca Falls Convention. Among those pioneering lady leaders  – feminists if you will – were Jane Hunt, whose home we visited today, Lucretia Mott and Elizabeth Cady Stanton. Approximately 40 men attended, including  Frederick Douglass, a former slave and then-editor of an abolitionist newspaper, the North Star, published in Rochester.

Which takes me back to this blog’s communication theme. We’ll be home again, in NYC, late tomorrow, and I’ve got an early class to teach on Wednesday morning.

What this means, dear readers, is that summer’s over and we’ve got to bet back to hard Medical Lessons. We’ll cover more serious stuff, for a while at least and for the most part –  journal articles, some new science and, well, learning about diseases, pathology, and how we might treat some of those.

Stay posted!

Women's History Postage Stamp

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adjusted, AM 9/8/10

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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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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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Cooking With Universal Precautions

A half-billion or so eggs were speedily pulled off semi-cooled supermarket shelves this week. The concern is that bacteria-laced eggs can cause serious and even deadly illness. The companies that produced and disseminated those marked eggs fear more lawsuits. Some people who usually enjoy their eggs in the morning, sunny-side up, are thinking twice.

The greatest egg recall ever set off alarms on CNN (Paging Dr. Gupta), on the front page of my newspaper’s business section, on some health blogs and in some homes. I’m concerned and saddened by this, about the cost of all this – the frank wastefulness of it. Our food supply is not infinite.

But I’m not particularly worried about getting sick from eating eggs at this time. Rather, I’ve been aware of this potential problem at least since 1984, when I took classes in microbiology. That raw or undercooked, runny eggs can effectively deliver salmonella to the digestive tract is something doctors learn in medical school. (And, maybe, the rest of the population should be taught in what used to be called home economics?)

In my home we don’t eat a lot of eggs, mainly because of my personal aversion and fear of cholesterol-lowering drugs. We go through perhaps a dozen eggs in most months. But when I do cook with eggs, whether that’s in baking a quiche, vegetable soufflé or cake, or rarely, for breakfast in omelet or scrambled form, I cook them thoroughly, applying heat through-and-through, and keep any utensils that have touched raw egg apart from anything else in the sink or on the kitchen counter.

Shifting gears, just a bit – this story reminds me of a gradual change in how we practiced medicine in the years after the start of the AIDS epidemic. In 1983, when I entered medical school, few doctors wore gloves except when they were performing surgery. At Bellevue Hospital in 1985 and 1986, my classmates and I helped to deliver babies with our bare hands.

Gradually, and as fear caught on, some doctors started to discriminate – they’d wear gloves while drawing blood from a patient with obvious risk factors for HIV, such as a promiscuous homosexual man or an intravenous drug user. But I always thought to myself, you never know who’s got what virus, we should be careful more often.

A few years later, when I was a resident physician and pregnant fellow, the concept of universal precautions came into widespread practice.  Doctors and nurses learned – had to be instructed – to don gloves whenever they drew blood or potentially came into contact with any patient’s body fluids because, the idea emerged, anyone might have HIV. Better to be careful in general, without prejudice.

These practices annoyed some at first. For doctors, they cost us time and the value of touch. Among other problems, it became suddenly more difficult to insert an IV catheter in one shot because feeling a patient’s vein is a lot harder when there’s a layer of material between your fingers and the patient’s skin. I suspect, also, that some hospital administrators must have resisted, too, because of all the money needed to buy all those gloves and new-fangled needle-dispenser boxes.

Some food-minded folks and editorialists suggest that risk might be reduced by buying less-travelled eggs from local producers. But regardless of where you live and shop for food, local farmers vary in their practices and habits. As for organic farms, there’s no real evidence that those are cleaner than other agricultural sources. (Some may be, but which? It could go either way.)

This situation bears some analogy to the reason why doctors implemented universal precautions in medicine. Some of us harbor prejudice (and maybe even some anger or resentment…) against efficient, industrial-sized food-growers and may be, accordingly, biased and even lenient in attitudes on standards and regulations for local farmers’ markets. And so the danger is, we may be less careful with eggs from a small-scale farm down the road. Those eggs seem OK, or at least we feel better about their purchase.

My point is, it’s generally better to behave without bias.

I think it would be smart for cooks to use universal precautions when handling eggs. There’s always some risk of contamination by salmonella and other disease-causing bacteria. I cook eggs well, regardless of their source or what’s picked up in today’s news.

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Eye Care

On Friday I had a slightly, subtly dehumanizing experience at the eye doctor. It’s no big deal, really, almost not worth mentioning –

It was an entirely ordinary set of events that triggered this near-rant from this determinately positive blogger. But maybe the commonality of it – the blandness of what happened when I visited the doctor the other day – typifies what’s as a tragedy in modern health care: the loss of caring.

eyeglasses on a table (Wikimedia Commons)

How it went was like this:

That morning I raced (or, rather, walked quickly – but dangerously quickly for a woman with poor balance and limited gait) to catch the bus to take the train to reach the optometrist’s office on time. And I did.

The office was crowded but not full. A receptionist sat behind a partly glass-enclosed counter with desks, fax machines and filing cabinets and other workers.

“Name, please” she asked me.

I told the woman my name.

She nodded. “Take a seat, someone will be right with you.”

I waited just over half an hour, during which time I had the opportunity to look around and listen.  A man, who said he’d undergone Lasik surgery the day prior was “seeing great” as he chatted enthusiastically with a couple to my left, one half of which was contemplating the procedure.

“It’s a miracle,” he said. “I’m having each done separately, one at a time.”

After a while I returned to the receptionist’s window and noticed a sign having to do with Botox injections and information on a doctor who might provide those.

My mind wandered… I never knew that eye doctors do Botox. Then again, maybe they don’t…Perhaps this office maintains a reciprocal relationship with an office that provides those, where the staff posts notices about Lasik surgery. Either way, the sign is nothing more than a business strategy, which is fair enough if you believe that health care can or should be run as a money-making enterprise. (I don’t.)

Back to my optometrist, who was running late (OK, usually forgivable, human):

How I first met this capable woman was through the long-ago care of my semi-retired ophthalmologist, a medical doctor (MD) who provided start-to-finish eye examinations and might, if you ever needed it, perform eye surgery. I trusted him and always felt good about visiting his office.

Some time ago he expanded his practice, taking in some less-established doctors and optometrists. The idea, I imagine, was to have a doctor of optometry (DO) carefully perform the initial eye exams, patiently fit vision-impaired people with just the right prescriptions for their lenses and, finally, refer any questions or concerns to the ophthalmologist in the same office. In this sort of setting, he could spend more of his time helping, and doing procedures, for patients with serious eye problems like glaucoma.

I was happy with the system for most of 10 years. I genuinely liked the optometrist, and still do – she did a terrific job evaluating my vision and optimizing my lenses. Around the time I had breast cancer, bald and walking with a needed cane, she looked into my eyes with extra care. She was sympathetic and spent an unusual amount of time making sure that my glasses would be all right, if nothing else.

The problem – what I’d diagnose as a change in the practice’s character – manifest a few years ago after the group moved to a new office space where there seems to be a lot more traffic. The carpeting on the floors, once fresh-appearing, is no longer. The waiting area, formerly quiet, has a TV broadcasting CNN. But I don’t care much about the floors or media selection.

What bugs me is that the office has expanded and become so systematized that when I go there I don’t feel like I’m visiting a doctor, the kind of professional who sincerely cares about my health. Instead I feel like a commodity, which I suppose I am.

Back to the visit:

As has happened before, a technician called my name  and asked me to come with him, so I did. He was young and unfamiliar. He told me his first name and, without further explanation, indicated where I should sit while he used a machine to take pictures of each retina, the light-receiving membranous surface at the back of the eyes. Next, he asked me to follow him into a small room where he proceeded to open my chart and question me, sketchily, about my recent medical history.

I wasn’t thrilled about sharing, but went along up until a point. Then, when he began to perform my eye evaluation – the exact sort of work that the optometrist used to spend her time with me doing, I asked him what was going on. Where was she?

“She doesn’t do this part any more. It’s been like that for a while. Now please, can you read the letters in the first row…”

So now the optometrist, who had for years assisted the ophthalmologist, has an assistant who would evaluate my vision instead. This saddened me, first and selfishly because I’d spent the better part of my morning going to see her so that she could check my eyes and write another ideal prescription I could rely on, and now I couldn’t count on that small part of my health care going smoothly ever again.

What’s more – and the bigger picture – is that she no longer has time for me and my eye glasses. I see this simultaneously as good and bad:

Good – I suppose, because we don’t really need people with MDs, and probably not even with DOs, for routine examinations and procedures that could be handled by someone with less training and who is, therefore, less valuable in our limited health care system.

Bad – It happens that the particular technician who started to check my eyesight did a poor job until I stopped him at that. The machine he used to project letters into a mirror shook so much that the small blurry letters in the lowest row wobbled clearly.

More generally – it’s bad because the time I once valued with my optometrist, as previously with the ophthalmologist, is gone. I guess it wasn’t sufficiently worthwhile for them to keep the relationship going as it was. No more annual, while they’re flipping the glass circles, questions like “how are your kids?” or “how’s your summer going” or a generous, once-credible “how are you feeling?”

My visit was almost reduced to a series of standard interactions with a technician of unknown credentials who I don’t expect to ever see again. I intercepted that, this time, but this scenario will surely recur, overwhelmingly, as health care delivery becomes more checklist-based and efficiency-minded.

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Some definitions – for those of you who aren’t completely confident in your knowledge of the distinctions among eye care specialists:

An ophthalmologist is a medical doctor (MD) who specializes in eye diseases and might perform eye surgery.

An optometrist is a professional who’s earned a doctor of optometry (DO). Usually this requires four years of post-graduate education that covers eye diseases, pharmacology, anatomy and more. Optometrists are trained, extensively, to examine the eyes, give prescriptions and perform certain procedures.

An optician is someone, typically a licensed professional, who helps people get the eye care they need and may prescribe eye glasses or contact lenses.

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New NY State Law on Information for Women Undergoing Mastectomy

A few days ago, NY State Governor Paterson quietly signed a new public health law* on information and access to breast reconstructive surgery. From the details provided on my state’s Open Legislation website, it seems this took place on August 13.

The purpose of the new law is to assure that all women undergoing mastectomy in NY are told about reconstructive surgery options and that insurance will cover those additional procedures.

What’s curious are two things – first, why so little coverage of this event? It is end-of-summer, I suppose.

But maybe editors and people like me who are educated in medicine and read newspapers are out-of-touch with the fact that many women who have breast cancer – over 200,000 each year in the U.S. – still don’t really know about breast reconstruction during or after cancer treatment. In my community, people read books and ask multiple doctors in second and third opinion before deciding whether to undergo a trans-flap or have implants inserted and then, once electing for implants, attempt a careful review the not-so-current literature on silicone vs. saline…

The reality is that many women, particularly poor women without newspapers or internet access in their homes, don’t know about any of this. They don’t know their insurance covers pretty much all of these options, by law. Now they will, or should as of Jan 1, 2011. Good.

The other curiosity is that a Montefiore Medical Center-affiliated plastic and reconstructive surgeon is said to have authored this bill, which was sponsored by State Senator Ruth Hassell-Thompson. The doctor’s intentions were surely good; he advocated its passage based on the sad case of a single mom who, after undergoing mastectomy and seeing several physicians, still wasn’t aware that she might undergo breast reconstruction. Nonetheless, it’s not surprising that a plastic surgeon in the Bronx cares about this legislation.

There is a dark side to this, unfortunately. Even among the women with good insurance and purportedly top docs, the results of reconstructive breast surgery are sometimes devastating to the women who undergo these procedures. These are no boob-jobs, and there’s widespread misconception about that. So I hope the law, also, might eventually protect women from botched attempts at reconstruction, an under-reported problem that might also be newsworthy.

*addendum – first link above adjusted because the previous url, http://www.cnbc.com/id/38743477 is no longer available, ES 2/14/11

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First Take On the Big C

Laura Linney as Cathy in The Big C

Last night I stayed up to watch the first episode of Laura Linney portraying a middle-aged woman in a new series called The Big C. The story is that she’s got a teenage son and a recently estranged, overweight husband who loves her. She lives in a suburban house that could use some work.  She teaches in a high school. She has a brother who’s deliberately homeless.

Her name’s Cathy – how ordinary can you get? Well, Cathy recently found out she has a terminal case of melanoma. In a change of pace, she expresses herself freely and does pretty much whatever she feels like doing.

For me, this TV situation has some big draws:

Laura Linney‘s a fine, not uninteresting actress. A few years ago she played a charming Abigail Adams in a history-minded miniseries. But I couldn’t bear to watch her miscast counterpart, Paul Giamatti, pretending to be President John Adams, so I didn’t. As in the storyline of the Big C, here’s an opportunity for Linney to shine.

Gabourey Sidibe, a young obese woman who stars in the movie Precious, may or may not be a fantastic figure on film or TV. She’s yet to be established beyond her debut and after watching last night’s episode I’m concerned already that she’s being “used” as an object for the protagonist’s preterminal beneficence. Still, she’s a definite plus.

The Big C‘s plot includes at least two “atypical” and potentially complex features. First, Cathy chooses not to take chemotherapy or other treatment. This intrigues me, and may be the show’s most essential component – that she doesn’t just follow her doctor’s advice. Second, she doesn’t go ahead and inform her husband, brother or son about the condition, at least not so far.

We’ve seen this non-communication before in movies (Susan Sarandon in Stepmom, for instance) and in real life, for most of human history. It’s too-easy for a blogger-patient-oncologist to forget that not long before our Facebook era, most people didn’t talk much about having cancer and even today, many patients prefer not to do so. Norms change.

If the point of the Big C is to broaden the dialog on cancer and talking about cancer, that’s worth a lot, still.

What’s wrong with the program? I think the doctor has some brushing-up to do about his image. He’s 31 and Cathy’s his first “case” – all of which is credible, but with the exception of an x-ray briefly revealed on the wall-mounted light-box, it’s not clear if he’s an oncologist or a dermatologist somehow offering her chemotherapy and pamphlets. His white coat is too short, in the style of a medical student’s. He uses few polysyllabic words. He looks well-rested and neat. In one strange scene, the patient and doctor meet for lunch at a pleasant outdoor restaurant. That’s not how oncology’s practiced, at least as I know it.

But I’m learning, too. And I’m wondering about the informational content of the doctor’s slick handouts, about which the protagonist, Cathy, has a vision.

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The Physical Exam’s Value is Not Just Emotional

Lately there’s been some talk about the value of the physical examination. It’s my sense that this discussion was sparked by a lovely piece by Danielle Ofri published two weeks ago in the New York Times. In that, Dr. Ofri describes a patient’s visit in which, toward the end and almost as an afterthought, she pulled out her stethoscope and performed a physical exam in a perhaps cursory but essential, thoughtful manner.

Or is it so cursory? There’s little scientific evidence to support the physical exam in practicing medicine but, as she writes:

…Touch is inherently humanizing, and for a doctor-patient relationship to have meaning beyond that of a business interaction, there needs to be trust — on both ends. As has been proved in newborn nurseries, and intuited by most doctors, nurses and patients, one of the most basic ways to establish trust is to touch…

KevinMD picked up on the story, essentially echoing the idea in a post called “Touch Humanizes the Doctor-Patient Relationship.” In that, he considers that some doctors (including him, previously) dismiss the physical exam obsolete – “like staying with a horse and buggy when cars are rapidly becoming available.”

It happens I know something about physical exams. Early in my years as a junior faculty member at Cornell’s medical school, around 1994, I was assigned to teach physical examination to second-year students during each of two consecutive spring semesters. To prepare for teaching, I carefully reread my copy of Bates’ Guide to Physical Examination.

my old copy of Bates’ Guide to Physical Examination, on my desk now

Together, my students and I listened to normal and abnormal heart sounds. We looked in each others eyes with ophthalmoscopes. We visited some of my patients with lymphadenopathy (swollen glands), big livers and palpable spleens who were willing to let us learn from their pathological physical findings. We listened and described course and fine rales on some pneumatics’ lung exams, and checked arthritic joints for swan-like deformities characteristic of rheumatoid arthritis. We examined patients’ petechiae, purpura, ecchymoses and more, and discussed the differences among those findings and what they might signify. All of this we did without CT scans or echos.

I know also, as a patient, that physical examination can be life-saving. Once, when I was in the hospital as a child and had unexplained fevers after surgery, it seemed for a while that no one could figure out what was wrong. I was terrified. The surgical team consulted with an infectious disease specialist, who as I recall ordered a whole bunch of unpleasant tests, and then my dad – a physician – noticed that one of my legs was more swollen than the other. He realized, based on my physical exam, that I might have a blood clot. It turned out that he was right.

So I agree that the physical exam is humanizing. So much so that, later in my career when I routinely donned space suit-like gowns and masks on rounds for the leukemia and bone marrow transplant services, I became frustrated by those barriers, and by the very lack of touch which, I think, can help patients heal.

But what’s also true, in a practical and bottom-line sort of way, is that a good physical exam can help doctors figure out what’s wrong with patients. If physicians were more confident – better trained, and practiced – in their capacity to make diagnoses by physical exam, we could skip the costs and toxicity of countless x-rays, CT scans and other tests.

Recently I wrote a piece on medical education and going back to basics. The physical exam should be included, for sure.

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Today’s Calls

This is an easy post with a simple message. Maybe it’ll even help some people.

Earlier today, in the midst of a deep water exercise class, I remembered that I needed to  call my eye doctor before the weekend. You see, I’ve been meaning to get a new pair of glasses and it doesn’t make sense to get those without a current prescription. Then I realized that I hadn’t been to see her in two years. Time flies –

Like many people, I’ve been carrying around a mental stack of offices I’ve been meaning to call. So instead of taking care of some serious writing for a book proposal, that I really need to do, I ran the list:

  • internist
  • ophthalmologist
  • dermatologist
  • physical therapist
  • gynecologist
  • oncologist
  • orthopedist
  • other appointments (for your kids, spouse?, partner, whoever depends on you …)

Done!

It turns out that late summer is a great time to call medical offices for routine appointments. (Sorry secretaries, I know the doctor’s vacation is when you tidy up, even electronic paperwork and filing.) But seriously, someone answered the phone promptly or readily returned my call today. What’s more, I beat the post-Labor Day rush for adult doctors’ visits.

Calling is, unfortunately, too often an obstacle. But it’s no excuse.

(Not having insurance is another story, of course.)

Just do it!

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Shutting Off Nurse Jackie

A few months ago I wrote that I’d take another look at Nurse Jackie, a ShowTime series about a drug-addicted ER nurse and mother. The posters, featuring Edie Falco as the program’s heroine, caught my eye; she’d charmed me in her previous role, as Carmela Soprano. Besides, this story’s set in NYC. The hospital is vaguely-modeled upon St. Vincent’s Medical Center, a recently-shuttered Catholic Hospital in Greenwich Village.

Out of some sense of compulsion, wanting to provide careful follow-up to my readers, I forced myself to watch each episode before completing this review. Unfortunately I found the series so unpleasant, besides uninteresting, that it took me months to plod through my assignment.

Jackie is supposed to be a crackerjack nurse who has some serious problems including drug addiction. That premise might be fair enough, in a House-like way, if her life-saving skills had unique value. But they don’t: the underlying problem with this show is that Jackie has no exceptional or redeeming qualities as a nurse. Sure, she cares about some of her patients, but that’s nothing extraordinary. Rather, she stands out by lying, making up results and, not infrequently, cutting out when and where she’s needed.

The emergency department where Jackie works is supervised by a not-quite indifferent administrator portrayed disappointingly by Anna Deavere Smith, whose real talents reach far beyond the realm of the petty disputes and not-unusual life issues that plague this TV hospital’s staff.

As a physician-blogger who’s trying to understand the potential value of Twitter in health care, I thought perhaps I might learn from the show’s ER doc Cooper’s social media skills: he tweets while working, nominally as a physician. But he’s presented as such a vain, stupid twit that he’s just not credible as a doctor of any kind. Even his Tourette’s tics are adolescent – he grabs women’s breasts when stressed, a curious behavior that seems, if anything, to suit the show’s shallow drama more than any real patient’s disease.

Plenty of TV shows have offered insights on health care delivery by quirky, self-absorbed and sometimes-deluded workers with interpersonal issues and stress (think M*A*S*H, for starters). But this series doesn’t make that grade. There’s no adult humor, no attempt at medical mystery-solving or even a good, old-fashioned medical ethics quandary. Unlike the Sopranos‘ story, here most of the characters bear little depth. Jackie’s multiple psychopathologies are a vile, exaggerated example of a woman juggling too many things, badly.

So I was surprised to find out that Jackie’s contract was renewed. Even more, I wish that the real St. Vincent’s Hospital, which once provided care to me and, over the years, helped countless other real New Yorkers, were still open.

I won’t revisit this show. But I’m looking forward to The Big C, which starts on Monday. Hopefully that will deliver better entertainment, or at least some fresh ideas.

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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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Back to Basics – But Which Ones?

A front-page story on the Humanities and Medicine Program at the Mount Sinai School of Medicine, here in Manhattan, recently added to the discussion on what it takes to become a doctor in 2010. The school runs a special track for non-science majors who apply relatively early in their undergraduate years. Mount Sinai doesn’t require that they take MCATs or the usual set of premedical science courses – some college math, physics, biology, chemistry and organic chemistry – before admission.

The idea of the program is two-fold: first, that the traditional med school requirements are a turn-off, or barrier, to some young people who might, otherwise, go on to become fine doctors; second, that a liberal arts education makes for better, communicative physicians and, based on the numbers published in a new article, a greater proportion who choose primary care.

Today Orac, a popular but anonymous physician-scientist blogger, considers the issue in a very long post. His view, as I understand it, is that if doctors don’t know enough science they’ll be vulnerable to misinformation and even quackery.

On the side of the spectrum, perhaps, Dr. Pauline Chen, a surgeon who puts her name on her blog and essays. In a January column, “Do You Have the Right Stuff to Be a Doctor?” she challenged the relevance of most medical schools’ entry requirements.

I see merit on both sides:

It seems fine, even good, for some students to enter medical school with backgrounds in the humanities. Knowledge of history, literature, philosophy, art history, anthropology and pretty much any other field can enhance a doctor’s capability to relate to people coming from other backgrounds, to recognize and describe nonparametric patterns and, perhaps, deliver care. Strong writing and verbal skills can help a doctor be effective in teaching, get grants and publish papers and, first and foremost, communicate well with patients and colleagues.

Still, there’s value in a doctor’s having a demonstrated aptitude in math and science. Without the capacity to think critically in math and science, physicians may not really understand the potential benefits and limitations of new medical findings. What’s more, doctors should grasp numbers and speak statistics well enough so they can explain what often seems like jumbled jargon to a patient who’s about to make an important decision.

Thinking back on my years in medical school, residency, fellowship, research years and practice in hematology and oncology, I can’t honestly say that the general biology course I took – which included a semester’s worth of arcane plant and animal taxonomy – had much value in terms of my academic success or in being a good doctor. Chemistry and organic chemistry were probably necessary to some degree. Multivariable calculus and linear algebra turned out to be far less important than what I learned, later on my own, about statistics. As for physics and those unmappable s, p, d and f orbitals whereabout electrons zoom, I have no idea how those fit in.

What I do think is relevant was an advanced cell biology course I took during my senior year.  That, along with a tough, accompanying lab requirement, gave me what was a cutting-edge, 1981 view of gene transcription and the cell’s molecular machinery. Back then I took philosophy courses on ethical issues including autonomy – those, too, proved relevant in my med school years and later, as a practicing physician. If I could do it again, now, I’d prepare myself with courses (and labs) in molecular biology, modern genetics, and college-level statistics.

My (always-tentative) conclusions:

1. We need doctors who are well-educated, and gifted, in the humanities and sciences. But for more of the best and brightest college students to choose medicine, we (our society) should make the career path more attractive – in terms of lifestyle, and finances.

(To achieve this, we should have salaried physicians who do not incur debt while in school, ~European-style, and who work in a system with reasonable provisions for maternity leave, medical absences, vacation, etc. – but this is a large subject beyond the scope of this post.)

2. There may not be one cookie-cutter “best” when it comes to premedical education. Rather, the requirements for med school should be flexible and, perhaps, should depend on the student’s ultimate goals. It may be, for instance, that the ideal pre-med fund of knowledge of a would-be psychiatrist differs from that of a future orthopedist or oncologist.

3. We shouldn’t cut corners or standards in medical education to save money. As scientific knowledge has exploded so dramatically in the past 30 years or so, there’s more for students to learn, not less. Three years of med school isn’t sufficient, even and especially for training primary care physicians who need be familiar with many aspects of health care. If admission requirements are flexible, that’s fine, but they shouldn’t be lax.

Critical thinking is an essential skill for a good doctor in any field. But that kind of learning starts early and, ideally, long before a young person applies to college. To get that right, we need to go back to basics in elementary and high school education. If students enter college with “the right stuff,” they’ll have a better understanding of health-related topics whether they choose a career in medicine, or just go to visit the doctor with some reasonable questions in hand.

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The “Survivor” Term After Breast Cancer: Is There a Better Expression?

I hope this post will be the start of a long conversation on breast cancer survivorship. The question is, what’s the right, PC and emotionally-sound, sensitive but not sappy term to describe the situation of a person who’s living after breast cancer?

Some might say, who cares if you’ve had it?

Once, about six years ago, a colleague – an oncologist in my community – I met on the street stopped and asked me how I’d been. I said, well, I’d been out for a while because of some health problems. I mentioned that I had breast cancer among other things. “Who doesn’t have breast cancer?” she quipped, and then we talked about medical offices.

So what? was her point.

Sure, everyone’s got stuff by the time they approach their 50th birthday. Life would be pretty boring if we didn’t. And my personal history happens to include BC.

OK, NBD.

Why it matters, at least in my situation, is that I’m writing about health issues including breast cancer. So I think it would be deceptive to not mention this loaded “credential.” In a few weeks I’ll be teaching med students again, and although I don’t think that episode of my life is central to my capability as a teaching physician, I do think (and hope) it makes a difference.

Thinking more generally:

A lot of women, me included, have major physical changes upon undergoing treatment for BC. My hair was curly for most of a year. My breasts are gone. My bones are thinner and I’m estrogen-deprived. Sound depressing? It is, for as many as 30 to 40 percent of women at some point after their diagnosis. It’s not a minor experience in the physical, emotional or life-changing sense.

TV aside, the problem with the “survivor” term is that, maybe, it implies some sort of heroism or strength. But as an oncologist who happens to have had good insurance, knowledge and friends in the field, I just see it as, largely, the luck of the draw: there’s no reason for me to survive while another woman struggles and succumbs to metastatic disease.

I can’t deny to my readers, family, friends and others that I’ve had breast cancer, because it does affect my writing, feelings, capabilities and outlook. But I wish there were a better term for my status.

Any ideas?

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Living Like It’s Shark Week!

Today is the start of this year’s Shark Week on the Discovery Channel.

shark (adapted image from Wikimedia Commons)

Dialog from NBC’s 30 Rock, Season 1, Episode 4 “Jack the Writer” (2006)*:

Tracy Jordan: But I want you to know something… You and me, it’s not gonna be a one-way street. Cos I don’t believe in one-way streets. Not between people, and not while I’m driving.

Kenneth: Oh, okay.

Tracy Jordan: So here’s some advice I wish I would have got when I was your age… Live every week, like it’s shark week.

(No further explanation is given. In the next scene the comedy writers take a one-minute dance break and then Jack provides an intro to GE’s six sigma program.)

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What the Dermatologist Did Right

Kudos to my newest doctor, a dermatologist whom I met yesterday for evaluation of a small, benign-appearing mole I recently noted on my right leg. What she did right:

1. She saw me promptly, at the time of my scheduled appointment.

(Thank you, you seem to value my time, as I do yours.)

2. In her initial clipboard-bound paperwork, along with the usual forms about my history (always with insufficient space for my case and, unfortunately, still non-electronic) she asked not only for emergency contact information, a standard, but for the name and relationship of someone besides me – such as a family member or close friend – with whom she might discuss my condition, if I permitted.

(Thank you for asking this and really, I’d prefer that you not speak with my parents about my results. I’ll be turning 50 next month.)

3. In the same short set of greeting paperwork, she didn’t just ask for my phone numbers and other contact information. She took this to another level and asked if it’s OK to leave a message on my home’s answering machine.

(Thank you again, for asking. I have teenage sons and don’t particularly want them hearing about my appointments or biopsy results before I get the message.)

4. Her assistant walked me into a room and told me to stay dressed. “The doctor likes to talk to people with their clothes on, before they put on the gown,” she explained.

(This was really terrific, and I hadn’t even yet met the doctor!)

I wasn’t disappointed: when Dr. G. entered the room, she was professional, considerate and thorough. I got the feeling she works conscientiously and carefully. And that she cares.

——

I can’t help but reflect on what a difference these sorts of details can make in a patient’s experience. How many times had I been in an orthopedist’s office for the first time, or at a different dermatologist’s, pleading with a nurse or technician that I might keep my clothes on until I’ve met the doctor and we’ve spoken.

It’s inefficient, I suppose, for doctors to meet patients in a small exam room, to exit and then re-enter after they’ve changed into a gown. But it’s humiliating, I feel, for an adult woman or for any person to meet the physician, especially for the first time, when they’re not wearing clothes.

A dermatologist, or any doctor for that matter, can’t necessarily take away the condition you have, which may or may not be serious. They may not have an easy remedy. But if they treat you with courtesy and respect, that makes it easier to cope with any situation.

Fortunately the lesions Dr. G. removed are likely nothing more than benign moles with Greek-derived names. One was a bit vascular. The lesion bled once she snipped it off, and so I can’t swim for a few days until the wound heals. But otherwise I’m doing fine.

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Suggestions to Reduce Errors in Breast Cancer Pathology

A prominent article in yesterday’s New York Times considers some troubling problems regarding inaccuracy in breast cancer diagnosis and pathology. The main point is that some women get needless, disfiguring and toxic treatments after being told they have breast cancer when, it turns out, their condition was benign.

My main take on this situation – which doesn’t just apply to breast cancer – is that, whenever possible, patients should get a second opinion on biopsy results before undergoing major treatment. The costs of a second pathology review is sometimes covered by insurance, but sometimes it’s not; either way, that’s money well-spent, especially if the opinion is rendered by an appropriately-credentialed, expert pathologist who works in a state-of-the-art facility.

From the doctor’s perspective there’s responsibility, too. Surgeons shouldn’t lop off a woman’s breast without knowing that the pathology is real. Well-trained oncologists know they’re supposed to review the pathology, to make sure the diagnosis is true, before giving chemo. The Times story indicates that the Cancer Treatment Centers of America has a specific policy in this regard, that doctors there must review the pathology for patients who are new to their system. This wise policy, common in some hospitals and tumor boards such as where I practiced, makes it less likely that oncologists or other doctors will give inappropriate treatment.

From an administrative standpoint, there could be better regulation to assure quality. Pathologists who are employed, busy evaluating tumor specimens without supervision, should be board-certified and required to be up-to-date in the specialized fields of their practice. And laboratories (as opposed to pathologists who work there) should be closely monitored because pathology errors can arise from faulty stains, use of poor-quality or old reagents, incorrect calibration of a machine, lack of appropriate “controls” for each batch of cases evaluated, etc.

A related story appeared earlier this year, also in the Times, on the variability of pathology reports. That article reported on how different pathology labs provide disparate results on whether a breast tumor has estrogen and progesterone receptors in the malignant cells, and whether the malignant cells express Her2 – the target of Herceptin – or not. The lack of agreement among pathologists renders treatment decisions difficult. The piece focused on a physician who couldn’t decide if she should take Herceptin or not, because she received conflicting reports about her tumor.

Getting the diagnosis right underlies many cancer care problems and undue costs. If I were an insurance company executive, I’d recommend that my firm cover the costs of a second pathology opinion in all cases. It’s far less costly to find out that a “tumor” is not really malignant than to pay for surgery, chemotherapy and radiation that’s not needed.

Better still, I’d insist that biopsy specimens be evaluated by pathologists who are trained in current methods and who work in trust-worthy laboratories.

Such a policy would reduce false positives in cancer diagnosis, and would thereby reduce the toxicity and costs of unwarranted cancer treatments. With better diagnostic facilities, those patients who do have cancer would not be so afraid to undergo the treatments they really need, because they’d be confident that they and their doctors were making decisions based on reliable information.

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Staying Healthy in Hot Summer Travel

Hiking, or even just walking, in the hot summer heat to see ancient ruins, national monuments or spectacular vistas can sap the energy of healthy people. For someone who’s got a health issue – like chronic lung disease, reduced heart function or anemia – or anyone who’s pregnant, elderly or just frail, summer travel can knock you out in the wrong sort of way.

Slowing down is not something that comes naturally to me. I’m always eager in sightseeing and keen on keeping up with my teenage sons; learning to pace myself and insisting that they go ahead uphill or down into a cave, without me, has not been easy for any of us. But after a few episodes of stumbling, lightheadedness and exhaustion so severe that I had to cut out of museums I’d traveled across the world to see, I’ve adapted a prophylactic, healthy approach to summer visits to remote places:

1. Don’t plan too much for any one day.

This means you may have to forfeit some activities and sites you’d like to see. Just as, while vacationing, some parents plan for “down-time” for their kids by a pool or beach, adults should set aside time each day for resting in a shady place.

2. Plan visits to hot sites in the early morning or evening.

Museums can provide terrific respite from the midday heat. Theaters, shopping malls and modern hotels are all fine places to wait out the sun’s peak.

3. Drink lots of water.

Depending on where you are traveling, this may require that you buy bottled water. Fake mineral water is rare, but you have to watch carefully for it by checking that the bottle cap is properly fastened.

(The movie Slumdog Millionaire includes an instructive and unforgettable take on this tourist’s nightmare; one scene depicts children systematically sealing plastic caps onto bottles of tap water in an unnamed, Mumbai restaurant. The film’s medical lesson: try to avoid buying beverages in places that seem untrustworthy.)

Keep in mind, restaurants usually wash and rinse the glasses with tap water. So if the tap water’s no good, drink your beverage straight from the bottle. And, if that’s the situation, don’t put dirty hands or fingers at the bottle’s opening because that’s where you’ll put your mouth.

4. Skip the ice if you’re not sure the water’s safe to drink.

If water or another beverage is served with ice in a glass, send it back. At some risk of seeming pedantic, I’ll repeat what my mom taught us while traveling: tap water is not safe to drink just because a hotel or restaurant proprietor says so. Rather, trust in your good judgment and common sense.

5. Bring tissues to handle bathroom doors.

Drinking fluids may lead to increased urination, which means you may find yourself in unclean restrooms that may not even have running water. Here, the most important thing is to avoid touching the toilet or any sink-handles or knobs with your hands.

6. Take time to sit and rest periodically.

Walking and standing for long stretches can cause back pain and fatigue. So even in a museum, typically a comfortable kind of place, whenever I spot a bench I’ll sit there for a few minutes. While out in a city, I might stop and buy a cup of tea at an inexpensive restaurant just for the purpose of sitting, or get on the bus just for the opportunity to take a seat.

—-

I find that if I pace myself, which means admitting that I can’t necessarily do all I’d like as fast as I want, I can see the world!

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Avoiding Blood Clots During Long-Distance Travel

A few years ago my family took a trip to China. Even before we arrived, I learned something about an unfamiliar health care culture. What I observed en route was that many of the older passengers on that long flight to Beijing were getting up from their seats and stretching. Not just once, but regularly and systematically – they were doing slow motion, isometric calisthenics on the airplane.

I took notice of their behavior first because it seemed a simple and inexpensive, albeit strange example of preventive medicine. Second, as a hematologist who cared for patients with blood clots upon traveling, I pondered the risks and benefits of their on-board exercises. Third, as a patient who’s had a blood clot, or deep venous thrombosis (DVT), I thought maybe I should follow their example.

Thrombophlebitis – the old term for DVT – happens when a vein (as opposed to an artery) gets clogged with platelets and fibrous proteins. These tend to develop in people who are immobilized – after a hip or spine surgery, for example, or during long, cramped trips in airplanes with little legroom. For this reason, long-distance travel (in any sort of vehicle – it could be a car or bus or a train) is a major risk factor.

Dehydration and some medications can exacerbate the risk of developing blood clots during travel, as can having some kinds of cancer. (Pancreatic cancer, prostate, ovarian cancer and other tumors in the pelvis are particularly troublesome in this regard.) Some people inherit an increased tendency to develop clots; in general these can be evaluated by blood tests.

Most often DVTs arise in the legs but sometimes these also occur in the arms and other body parts. The condition can cause discomfort, pain, redness and swelling of an affected limb. These clots are most dangerous, and potentially lethal, if they spread to the lung – what’s called a pulmonary embolism. So there’s good reason to avoid these as best you can.

Here’s a list of some precautions to avoid blood clots when traveling:

1. Try to get an aisle seat. This strategy allows you to periodically stretch your legs into the aisle, and to get up without disturbing others.

2. While seated, move your feet and legs around as much as circumstances permit, and at least every hour or so. If you absolutely must remain seated, flex your feet 10 times, and stretch your legs as best you can, bending and extending the knees, one at a time, in any available direction, 10 times each. Another exercise is to raise each foot and swivel it, pivoting the toes from side to side while keeping the ankle relatively still.

3. Get up periodically and walk, every hour or two if permitted. (This means getting less sleep if you’re lucky enough to fall asleep, but I think the trade-off is worth it: being tired upon arrival is unpleasant; getting a blood clot is worse than that.)

If you’re on an airplane – once you’re up and out of your seat, seek out a place near the kitchen, restroom or elsewhere where you might stand. Then, hold onto the wall or the back of a chair, lift and stretch each of your legs repeatedly and then march in place: one knee up, then the next for two minutes or so, as conditions (and flight attendants) allow.

4. Stay well-hydrated by drinking ample water. Alcohol is a diuretic and should be avoided or minimized; caffeine too. Of course, for some travelers with weak bladders drinking lots of fluids can create a need for frequent bathroom trips. But this isn’t such a bad thing if you’re at risk for DVT, because this gets you up and out of your seat.

5. Dress sensibly – avoid tight clothing. (Some doctors recommend TED (thrombo-embolic Deterrent) or other compression stockings for patients with DVTs who travel, but I find these graduated compression nylons so uncomfortable that they reduce mobility, besides the capacity to bend and flex my ankles and knees.)

For women: avoid “knee-high” stockings with compression bands pressing just below the knees. These are a set-up for reduced blood flow from the lower legs to the larger, central veins.

6. Talk to your doctor if you’re concerned about DVT and are planning a trip. Ask about what precautions you might take in the context of your specific medical circumstances. Some people use heparin, a blood-thinner, or other medications while traveling to reduce their risk. Keep in mind that for most people, the risk of forming a significant blood clot is low.

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The trip to China was fabulous, well worth the distance.

More on travel next week –

ES

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On Sergey’s Search (for a Cure for Parkinson’s Disease)

This week I brushed up on Parkinson’s disease. What drew me into this mini-review is an informative article, “Sergey’s Search,” that appeared in the July (print) issue of Wired and is now available on-line. The feature, by Thomas Goetz, offers insight on what it’s like to know that you’ve got a genetic disposition to Parkinson’s, details on some enzymes implicated in the illness and, further, considers what might be done to help future patients.

I recommend this article to any of my readers who are interested in genetics, Parkinson’s and/or what some even consider as a new era for health-related research.

There’s a lot to take in –

The Wired story starts with Google co-founder Sergey Brin. A Moscow native and, more recently, a California swimmer, Brin’s got his reasons for concern. He’s got a strong family history, for one thing: the illness has affected both his mother and aunt. It turns out Brin has a genetic disposition to develop the condition because he shares the disease-associated G2019S mutation with his mom. As Goetz explains, this alteration in the DNA segment of the gene encoding LRRK2, a leucine-rich repeat kinase, involves a single-nucleotide switch of an adenine for a guanine.

(I’ll add this, just in case you’re interested: the gene encoding LRRK2, or dardarin, resides at human 12q12 – that’s the long arm of chromosome 12. The G2019S nomenclature indicates that the mutation results in a change at the 2019th amino acid position along the protein’s encoded structure, so that a glycine, normally present, is replaced by a serine molecule at that spot. A fascinating tidbit, news to me today, is that when the gene was first cloned in 2004 the researchers, who’d studied several affected families of Basque origin, called it dardarin, derived from the Basque word dardara, meaning tremor.)

The G2019S mutation is relatively common among Ashkenazi Jews. Still, not all of those who carry the mutation develop the disease, and not all who have the disease have this particular mutation. Other genetic variants have been identified, and it’s not clear exactly how these wreak havoc with LRRK2’s function. Enzymes like LRRK2, a kinase, usually transfer ATP molecules from one protein to another. The presumption is that in Parkinson’s, abnormalities in this enzyme’s function – whether they’re caused by this particular mutation or another – somehow lead to loss of dopamine-producing cells in the brain.

Back to Sergey’s story –

“Brin didn’t panic,” Goetz reports (a point I’d emphasize too). Rather, he was reassured by his mother’s experience and high level of functioning with the disease. She still goes skiing (among other things one’s mother might do), he reasons.

What Brin is doing, along the lines of Goetz’s Decision Tree approach, is cutting his risk as best he can. He exercises regularly, doesn’t smoke, and funds research.

Like other rock star informaticists before him (think of Netscape founder James H. Clarke, who launched Healtheon and Steve Case, who started Revolution Health – these are my examples), Brin is struck by the slow pace of medical investigation:

“Generally the pace of medical research is glacial compared to what I’m used to in the Internet,” Brin says. “We could be looking lots of places and collecting lots of information. And if we see a pattern, that could lead somewhere.”

If only medical research could be more like Google…

Some clinical background:

Parkinson’s, a progressive and often debilitating neurological condition, affects a half million or so people in the U.S. As a practicing as a physician, I cared for many patients who had this illness. Although I would see them for other reasons, it was hard not to notice, and know, the characteristic tremor, rigidity and shuffling walk of those affected. The onset of symptoms is usually insidious, slow and unnerving.

As Goetz indicates, most of what doctors understand about Parkinson’s comes from observing patients in the clinic. Illness emerges, it’s thought, as the number of dopamine-producing cells in the brain diminishes. Dopamine is a neurotransmitter, a molecule that transmits messages between cells or groups of cells within the nervous system. Since around 1967, when the drug Levodopa was first marketed, doctors have prescribed this and other pills for people who have Parkinson’s. While these meds can ameliorate symptoms, these don’t reverse the unstoppable deterioration of body and, ultimately, the mind.

One problem with Parkinson’s research and treatment is that once the disease becomes evident, it’s hard – probably too late – to reverse the loss of dopamine-producing cells. Most people don’t develop symptoms until dopamine production is around 20 percent of normal levels. Now, with the advent of genetic markers and potential to “catch” this disease early on, there’s an opportunity for early intervention.

One promising area for Parkinson’s research:

LRRK2 is a kinase, a kind of enzyme that’s over-active in some cancers. Already, pharmaceutical companies have developed specific kinase inhibitors; a dozen or so are already FDA-approved for treatment of particular cancers, and many more are in the pipeline.

What excites me, in all of this, is the possibility that these drugs might be effective in patients with Parkinson’s disease. And because the same enzyme – LRRK2, or dardarin – is implicated in cases without the particular G2019S mutation, it may be that these drugs would work even in cases that lack this particular genetic feature. (There are examples in oncology, in terms of tumor genetics and responsiveness to targeted drugs, that would support this contention, but that’s just theory for now.) The bottom line, as I see it, is that these new drugs should be carefully tested in clinical trials.

Sergey’s view:

One of the key ideas in Goetz’s piece has to do what he considers and may well be a revolutionary approach to medical research.

…Brin is after a different kind of science altogether. Most Parkinson’s research, like much of medical research, relies on the classic scientific method: hypothesis, analysis, peer review, publication. Brin proposes a different approach, one driven by computational muscle and staggeringly large data sets. It’s a method that draws on his algorithmic sensibility—and Google’s storied faith in computing power…

In what may indeed be a “fourth paradigm” of science, as attributed to the late computer scientist Jim Gray, there’s an inevitable evolution away from hypothesis and toward patterns.

As I understand it, Brin seeks to invert the traditional scientific method by applying Google-size data-mining power to massive and very imperfect data sets in health. Already, he and his colleagues have accomplished this by Google’s Flu Trends, which several years ago beat the CDC to an epidemic’s discovery by two weeks.

You should read this article for yourself, as I’m afraid I can’t adequately describe the potential powers of computational health and science analyses that might be applied to well, pretty much everything in medicine. This goes well beyond a new approach to finding a cure for Parkinson’s disease.

This story, largely based in genomics and computational advances, reflects the power of the human mind, how the gifted son of two mathematicians who fell into a particular medical situation, can use his brains, intellectual and financial resources, and creativity, to at least try to make a difference.

I hope he’s successful!

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